We identified four themes relevant to the issue of language, culture, and translation: limited resources for Russian speakers; language interpretation and cultural practices related to the disclosure of cancer; Russian émigrés’ health care experiences in the FSU as a source of fears, expectations, and “challenging” interactions with providers; and suggestions on how to improve care processes among Russian-speaking émigrés. Each of these themes appeared repeatedly in the data.
Inadequate Russian Language Resources
The first theme was that local cancer clinics did not provide adequate Russian language resources. Patients and providers felt Russian was underrepresented relative to Spanish and Chinese, and we noticed more Spanish and Chinese signage and printed materials than Russian materials during our clinic observations. Family members and other non-professionals often provided Russian interpretation services, but our informants reported that family members, especially patients’ children, often did not have adequate Russian language skills to interpret medical and technical information. In addition, as one interpreter put it,
You cannot ask a family member to bear the burden...in a situation like this, it’s very difficult to deliver this kind of news and not have it be either a terrible emotional burden or incredibly edited by the family member to take out the hard parts, to save the person from suffering at that moment.
Culture, Interpretation, and the Disclosure of Cancer
The “terrible emotional burden” and desire to “take out the hard parts” mentioned by this interpreter related to the cultural taboo against disclosing a cancer diagnosis or even saying the word within the émigré community. Cancer could be seen as a “death sentence” in the émigré community. Telling patients, especially elderly patients, that they have cancer thus could be seen as “taking away their hope and spirit,” it could cause them to become depressed, and it could even diminish their willingness or ability to survive. Some providers avoided the “C” word with Russian-speaking patients in the manner this provider described: “I say tumor [and] I think everybody in the room knows what it is and the treatment for a tumor is pretty much the same as treatment for cancer. And we get around it by just kind of using a code word for cancer.”
Commonly, however, patients were told of their diagnosis to facilitate full disclosure and informed or shared decision-making. Providers noted that in the U.S. medical culture, it is necessary to discuss diagnoses with the patient even if this makes family members angry because “we can’t embark on a program of care unless we have the consent and engagement of the person who actually is suffering from the disease.” Several providers reported that “the patient would be really open” to full disclosure and “the family seems to be the largest obstacle.”
For interpreters, standard disclosure practices could lead to personal and professional dilemmas. One interpreter described an incident that began when a resident “pull[ed] rank on me” and insisted he tell an elderly man he had cancer. The patient replied, “I don’t have cancer. No, no, no, this is a mistake.” The incident continued:
The son comes by and I’m talking to him and I pull him aside and I said, “do you know that your father has cancer?” And he very matter of factly goes, “Of course I know. He’s had it for two years. We’ve been hiding it from him.” I says, “Well, you know, he didn’t know.” And I’ll never forget his face. It just froze and he stared daggers into me. He said, “You told him? You’re a Russian man and you told him?” I said, “Well you know, they, you know, I’m just a translator, I’m just translating.” He says, “Do you understand what this means to a Russian man? It means you’ve just given him a death sentence, he is going to lose all hope, he’s going to stop eating, he’s going to stop drinking, he’s just going to curl up in a corner and die. You’ve just ruined two years of us carefully hiding this from him.”
Anticipating this kind of dilemma, interpreters often tried to make the disclosure “softer” or to inform physicians “about the culture differences.” Some physicians agreed to a softer approach, but some, like the resident above, “ask us to tell word by word.”
Interpreters, Russian-speaking providers, and family often characterized the complex interactions related to disclosure as a linguistic and symbolic “game” involving patients, family members, and care providers. Playing the “game” was central to “respecting cultural beliefs”. But Russian speakers acknowledged the “game” did not always or necessarily mean patients were unaware of their diagnosis. Even as providers and family took respectful pains to shield patients from this information, patients played their role by feigning ignorance, as one Russian-speaking nurse described.
My father had colon cancer back in Russia, Ukraine, where I’m from, and our family never told him...And what I always felt that he knew what he had and he played the game because he didn’t want us to be upset that we know that he knows. I’m absolutely sure.
Translation and Health Care System Expectations
What accounts for the “game”? Patients, providers, and interpreters and members of the RCIT suggested that differences in the health care system of the United States compared to Russia and other states of the former Soviet Union (FSU) helped explain its origin and some other notable features of language use and translation in health care.
Respondents said the “game” of nondisclosure oftentimes reflected the view of cancer as a death sentence. “They’re coming from a culture where the treatments that are available here simply did not exist,” explained one interpreter. “There’s no treatment, there’s no cure, there’s no hope.” Cancer treatment in the United States was seen as far more effective than that in Russia and the FSU, and the view of cancer as death sentence could and did change over time. Respondents reported that as émigrés spent more time in the US, they came to view a cancer diagnosis in different terms and to alter their disclosure preferences. One interpreter with many years of experience in the United States noted that “patients are different now. They’ve been living here for a while...they look differently at many things.” Now, interpreters and providers found they could urge patients to view an early diagnosis as “a glass half full” because successful treatment was still likely. In the context of the U.S. health care system, therefore, respondents generally applauded improved treatments and prospects for recovery.
Other aspects of the U.S. system, particularly the provider–patient relationship, were seen as problematic and sources of difficulty in cancer care. Providers recounted these difficulties in painful detail—Russian-speaking émigrés who violated the norms and rules of the cancer clinic by demanding to be seen without an appointment, by refusing to be seen by some providers (nurses, residents, or fellows) and demanding to be seen by senior physicians, and by engaging in noisy and disruptive emotional displays in clinic waiting rooms and hallways—and we directly observed difficult interactions marked by these kinds of behaviors during clinic observations. Interpreters and Russian-speaking providers associated these difficulties with system differences between the United States and Russia/FSU. The role of the physician was frequently discussed in this context. To be “a real doctor” in the eyes of the émigré community required not just technical skills and training but also having “a heart, soul.” Lack of these ineffable qualities revealed themselves in seemingly minor details of how a patient was examined or addressed, as this interpreter focus group discussion highlights.
Respondent 1: Simple things like hands on...Patients get very, almost indignant that they just got palpated for two minutes. I said well they don’t know what they’re doing, you know, they palpate them and then they send you for a machine.
R2: Or listen through the shirt -
R1 (interrupts): - yeah, listening through the stethoscope. In Russia you get palpated for 8, 10 minutes -
R2 (continues): - you undress -
R1 (continues): - because you didn’t have the machines, but they were experts.
On the other hand, well-intentioned attempts to involve patients could undermine processes of care for patients accustomed to a different medical system. Informed consent, for example, as one Russian-speaking provider explained, “is not only foreign, but I would say makes a lot of the Russian patients skeptical... In Russia, you know, you just say do it and that’s it. When you start explaining...the Russians feel that you’re somehow equivocating.” Translation itself could engender skepticism among patients who expect physicians to “listen to the nuances in the person’s speech to get a sense of what’s wrong with them” because in Russia “they don’t have an MRI machine” to turn to.
English-speaking providers recognized that these different expectations of the health care system could lead to breakdowns in provider–patient communication, and at times, spectacular confrontations. One radiation technician described a Russian patient who had “just throw[n] her arms around me, crying, you know, begging me to get the results of her CT scan and the tears streaming down her face.” A nurse described Russian-speakers’ “strategies” to obtain immediate attention such as “being noisy about it or getting emotional about it or going to the emergency room and saying you have chest pain when you don’t.” Yet, while recognizing that these interaction styles and strategies reflected differences in their expectations for care processes, providers lamented that they often had the effect of exacerbating communication problems because, as the nurse pointed out, they “actually backfire a lot and make for lots of strained relationships.”
Improving Translation and Communication
Respondents provided two suggestions for improving translation and communication. First, they suggested that physicians and other providers take fuller advantage of professional interpreters’ services. Russian speakers believed interpreters could help address cultural differences in disclosure and social differences in treatment expectations if they were trusted to move away from “word by word” translation and to broker relationships between care-providers and patients. Interpreters recognized that providers who see “a thousand to ten thousand cancer patients” had to maintain their “clinical objectivity” for professional and emotional reasons. Interpreters suggested they provide culturally sensitive translation and communication by supporting and encouraging providers to talk to Russian patients “as if it was their own parents.” The second suggestion was to establish Russian-language support groups for patients and families. To establish a support group in light of taboos against discussing cancer, respondents suggested selective recruitment and emphasizing prevention. A Russian-speaking physician said, “I know patients for long enough, what is good for them and what is bad for them. So support group is fine for particular population, not for everybody.” He continued, “prophylaxis is number one for us. What is important—just get tested. What I’m trying to tell my patients, ‘go have a mammogram!’” Groups that emphasized prevention, and included survivors, would encourage émigrés to adopt a “glass half full” approach to cancer care, recognize the greater efficacy of cancer treatment in the United States, and overcome diagnosis and disclosure taboos.