CASE 6

Nadia Rosenberg

A 53-year-old Russian woman with drug-resistant tuberculosis

Elena N. Atochina-Vasserman, MD, PhD, and Helen Abramova, MD

University of Pennsylvania School of Medicine, Philadelphia, PA, USA

Educational Objectives

TACCT Domains: 4, 5

Case Summary, Questions and Answers

Nadia Rosenberg is a 53-year-old Russian woman who immigrated to the United States with her husband and two teenage children 3 years ago. She works 6 days a week as a housekeeper (although she was previously a University history professor in Russia). Her husband is employed as a seasonal construction worker. As a result of her income, they are able to afford some limited medical insurance. Her health has been good, and she has not seen a physician in the United States since she immigrated. However, over the last several weeks, she has begun experiencing a persistent cough. She has never smoked and initially attributed the cough to her exposure to cleaning solutions but became alarmed when she began to see streaks of blood in her sputum. She is not experiencing any fever, chills, or weight loss and otherwise feels fine. Because she is coughing up blood, she goes to the Emergency Department (ED) of a local hospital, where the waiting area is overflowing with patients waiting to be seen. After being evaluated by the triage nurse, she is instructed to remain in the waiting area until she is called to be seen. However, she approaches the registration desk every 15 to 20 minutes to ask when she will see a physician. Each time, she is instructed to return to her seat and is told, “We will call you when the doctor is ready.” After 3 hours, she leaves without being seen.

1 Given that the waits for nonemergent care in many EDs are usually long, why was Mrs. Rosenberg so impatient and decided to leave?

It goes without saying that, for most people in the United States, regardless of their background, long waits in an ED (whether real or perceived) before being evaluated would be a source of frustration. However, this frustration may be more pronounced given Mrs. Rosenberg’s recent immigration from Russia.

Health care in other societies is organized very differently from the American system, and the experience of illness and its treatment in this country may be very alien to immigrants. Thus, for Mrs. Rosenberg, her impatience and frustration at the “long wait,” and her subsequent departure without being seen, reflect the fact that, in Russia, the ED principally provides urgent and emergent care and very little primary care. As a result, patients are typically seen very promptly and rarely have to wait to be evaluated, particularly if they are coughing up blood. Furthermore, as Russian doctors routinely make house calls, she thought that if she left she would be able to easily arrange for a doctor to come to her home for a house call. This provides a small illustration of how a past cultural experience could potentially result in an ethnically based, health-related disparity.

As her English-language skills are very limited, the next day Mrs. Rosenberg asks an English-speaking Russian neighbor to assist her in obtaining an appointment with a lung physician. With the help of the neighbor, she is able to arrange for a visit with a pulmonologist the following week. Not knowing who else to ask, she has the neighbor accompany her to the pulmonologist to serve as an interpreter. As Mrs. Rosenberg waits to be seen, she is particularly fearful of a diagnosis of lung cancer.

2 What issues might result for the patient and the physician when using a neighbor or family member as an interpreter?

Patients with limited English proficiency may bring a friend or family member to their visit with the doctor to serve as an interpreter. In using this type of untrained individual, an accurate interpretation may not always be conveyed to the patient due to the friend’s or family member’s own limitation with English, lack of medical sophistication and experience, and/or inadequate communication skills. Furthermore, cultural factors may also intrude and distort the process. In Russia, for example, there is a culturally driven mandate to not fully inform patients (as understood in Western terms) of the nature and extent of their diagnosis regarding a terminal illness. Thus, the diagnosis of a metastatic cancer may be conveyed by the Russian interpreter to her Russian friend in a way that does not indicate the advanced nature of the malignancy. That is “опyxoль” (a benign, or operable tumor) may be used instead of “PAK” (an incurable cancer). Knowing that patients in Russia may not be informed of the diagnosis of a terminal cancer, the Russian immigrant who is particularly concerned about a cancer may fear that her Russian companion who she brought (or even the physician) will not be completely forthcoming about a cancer diagnosis.

Given the above, trained/professional interpreters or telephone interpreter services are preferred to interpretation provided by ad hoc family members, friends, or available, untrained medical or nonmedical staff. There are, however, some potential limitations should be noted. First, it is important to acknowledge the challenges faced by a trained interpreter in faithfully acting as a neutral, two-way, conduit of information and behavior. Second, the language barrier and the presence of an interpreter inevitably tends to stifle some of the purely social and spontaneous interactions, or “small talk,” that could and does occur between patients and physicians who communicate directly with each other in the same language. For groups where this kind of interaction is important, its absence may diminish some of their satisfaction with the physician encounter. Aranguri and coworkers also suggest that the lack of social discourse limits the physician’s ability to diagnose for him or herself any psychosocial disorders or compliance/adherence issues related to the social situation of interpreted patients.

Mrs. Rosenberg is seen by a pulmonologist, Dr. Ruth Davies. After the visit, a sputum sample is obtained for acid-fast bacillus (AFB) staining and culture, and a chest x-ray is performed. The chest x-ray reveals an upper lobe infiltrate, raising the question of pulmonary tuberculosis (TB). Although the initial AFB stains were negative, 3 weeks later the cultures confirm the presence of a multidrug-resistant (MDR) strain of tuberculosis. Upon receiving these results, Dr. Davies calls Mrs. Rosenberg on the telephone and explains that she needs immediate treatment and that she should come back to the office the next day to discuss this further. Mrs. Rosenberg says, “okay” to all of Dr. Davies’ statements and concludes the call with, “I understand.” However, Mrs. Rosenberg did not keep her scheduled appointment the next day. Dr. Davies calls her home multiple times, but is unable to reach her. She leaves several messages on Mrs. Rosenberg’s answering machine urging her to make an appointment as soon as possible, but Mrs. Rosenberg fails to do so.

3 Why would Mrs. Rosenberg say “okay” and “I understand” but fail to follow-up for further evaluation?

A number of patient-related factors may influence the level of patient adherence to prescribed medications, physician instructions, recommended treatments, or health-promotion activities. These include language barriers, life responsibilities, familial commitments, employment obligations, the level of financial resources, and the quality of health insurance, as well as the psychological and emotional distractions resulting from these factors. Also important are folk or cultural beliefs and the patient’s understanding of his/her disease or illness. In addition, actions on the part of the physician may contribute to poor patient adherence. These include failing to establish a trusting patient–physician relationship, prescribing complex treatments, and providing inadequate follow-up or poor instructions.

When Mrs. Rosenberg eventually does come for her visit, Dr. Davies learns that her reasons for not returning promptly were multiple. So, she in fact had not really understood the urgency of what Dr. Davies had said because of her limited English proficiency. When she had tried to call the doctor’s office (several times) to make an appointment, she was unable to navigate the phone system to speak to one of the office staff. And in the last week she had completely ignored Dr. Davies’ messages and had not tried to get help because she really could not afford to be absent from work. Finally, she admits that, in the back of her mind, she was fearful that she has cancer and was dreading to come to the doctor for the potentially bad news.

Epidemiology of Tuberculosis

The introduction of antituberculosis medications in the late 1940s was followed by a steady decline in the incidence of TB in the United States. However, beginning in the mid-1980s, there was a resurgence in the number of reported cases due to several factors, including: (i) the deterioration of the TB public health infrastructure; (ii) the HIV/AIDS epidemic; (iii) immigration of persons from countries where TB was common; (iv) transmission of TB in congregate settings (e.g. prisons and long-term care and nursing facilities); and (v) emergence of MDR TB. With aggressive public health efforts there have been dramatic decreases in the rates of new TB infections, such that in 2006, 13,767 tuberculosis cases (4.6 cases per 100,000 population) were reported, the lowest recorded since national reporting began in 1953. Racial and ethnic minorities in the United States are disproportionately affected by TB, with 80% of all reported TB cases occurring in racial and ethnic minorities. Much of the increased risk of TB in minorities has been linked to lower socioeconomic status and the effects of crowding.

Although the initial AFB stains were negative, 3 weeks later the cultures confirm the presence of a MDR strain of tuberculosis. After several additional failed attempts to schedule an office visit, Dr. Davies decides to call Mrs. Rosenberg’s neighbor on the telephone because she was listed as the emergency contact in her chart from the initial visit. Dr. Davies explains the urgency of the matter to the neighbor without disclosing her diagnosis. Through the intervention of the neighbor, Mrs. Rosenberg finally comes back to see Dr. Davies 1 week later, and the office arranges for a trained Russian interpreter to be present for the visit.

Mrs. Rosenberg answers the question, “What is your understanding of tuberculosis?” “This is a lung disease that makes people cough up blood; it is highly contagious; and in Russia, you have to live in a special hospital away from your family for many months. Is that what is going to happen to me?” And, “What do you fear the most?” “I am worried that I may have infected my husband and children.” This information pertains to a past or current cultural experience that can be used to facilitate the physician–patient relationship and promote patient adherence. In this regard, cancer is a common fear among Russians, and thus, many physicians who care for immigrant patients, such as Mrs. Rosenberg, from the former Soviet Union will begin these kinds of conversations by saying, “You do not have cancer.”

Tuberculosis in Russia

After years of gradual decline, the incidence of TB in Russia doubled during the 1990s, although TB incidence rates have stabilized over the last 5 years. Currently, the incidence rates for TB in Russia are 115 new cases per 100,000 people, placing Russia 12th among the 22 countries with high burdens of TB (WHO Global TB Report 2006). These numbers reflect the deterioration of the Russian health care system since the collapse of the Soviet Union in the early 1990s. This breakup facilitated the spread of infectious diseases, including TB and MDR TB in many former Soviet Republics.

According to the regulations of the City Health Department, Mrs. Rosenberg will have to report three times per week to the Health Department downtown to receive directly observed treatment (DOT) for her tuberculosis. This means a health care worker or another designated person observes Mrs. Rosenberg swallow each dose of her medication. When informed of this by Dr. Davies, she becomes very upset and expresses to the interpreter that she does not understand why she needs to take her medication under supervision as if she were a child. “I am an adult.” In frustration, Dr. Davies says, “It appears you don’t want to get better.”

4 Why might Mrs. Rosenberg be so resistant to DOT for her tuberculosis?

Although DOT for tuberculosis is deemed to be the appropriate public health response to the rise in the incidence of tuberculosis, its impact on individual patients and the disruption it might cause in their lives could be significant. Certainly making the effort to ensure that the patient understands the diagnosis and the importance of treatment is a necessary first step in acquiring patient adherence to this therapy. Equally, if not more important, however, is the need to fully understand how DOT will impact the patient’s life. This will allow the physician to address and respond to any current issues and anticipate and/or plan for future problems.

Upon further questioning, Mrs. Rosenberg reveals that she does not have a car and will need to take public transportation to and from the public health clinic. This requires two buses and 1.5 hours each way, as well as the cost of the bus fare. With some frustration she notes that, in Russia, it is much easier to get medication, and she feels embarrassed that she cannot be trusted to take her medications without being watched. Her biggest concerns, however, are the effects of this treatment on her job as a housekeeper. She has six clients, all Russian, and typically spends approximately 6 to 7 hours at a single home each day with the expectation that she will have completed her work before 5:00 p.m. Giving up three mornings each week would therefore disrupt the work schedules she has established with her clients and thus jeopardize her employment situation.

As the visit ends, Dr. Davies indicates that close contacts (such as family and friends) will have to be skin-tested for tuberculosis and/or obtain chest x-rays. Upon hearing this, Mrs. Rosenberg begins to weep uncontrollably.

5 Why might this request for family, friends, and other close contacts to be tested for TB be particularly upsetting to Mrs. Rosenberg?

According to the CDC, people who have had prolonged, frequent, or intense contact with a person with TB while he or she was infectious should be tested for TB. The real challenge is someone like Mrs. Rosenberg, whose pool of contacts is likely to include a fair number of individuals. Her response therefore could reflect emotions over a potential loss of privacy, shame and guilt over possibly infecting someone close to her, and fear of a possible negative response from some of her clients/employers.

One month after Mrs. Rosenberg is diagnosed with TB and begins DOT treatment, her husband loses his job. She has been traveling 3 days a week to the Health Center to receive her medications and pays for her own transportation every single time. She wakes up very early to travel to the Health Center and does not return home until 8 p.m. six days per week, causing her employers to complain that her work has been affected. It begins to wear on her, and she is struggling with the time that it takes and the pressure to support her family. She visits Dr. Davies’ office sobbing that she can’t do it anymore. Again, she asks, “Why don’t you trust me? Haven’t I earned your trust? This is becoming very difficult for me and I need to know some other options. Can you please call the Health Department and ask if someone can come to my home?”

6 Is it possible to make alternative arrangements for Mrs. Rosenberg to receive DOT for TB at home?

It is important that DOT be carried out at times and in locations that are as convenient as possible for patients to enable completion of the recommended therapy. Mrs. Rosenberg’s therapy has taken place in the Health Center. However, in most jurisdictions, arrangements can be made for DOT to occur at the patient’s home. For Mrs. Rosenberg, this would significantly improve her quality of life. In some situations, staff of correctional facilities or of drug treatment programs, home health care workers, the maternal and child health staff, or designated community members can provide DOT. If the Health Center can arrange home visits three times per week by a field worker, Mrs. Rosenberg should be informed that she will be routinely asked about adherence at follow-up visits. She should expect that her pills will be counted and she may be asked to provide urine samples periodically to check for the presence of drug metabolites. She will also be re-examined frequently to assess her response to treatment and told that if her sputum remains positive after 2 months of treatment, she will continue to be monitored for the remainder of treatment. Again, using a trained Russian interpreter to explain what Mrs. Rosenberg can anticipate will improve adherence. According to the CDC, establishing a relationship with the patient and addressing barriers to adherence is the core of a successful DOT program.

References: Case 6

Aranguri C., Davidson B., Ramirez R. Patterns of communication through interpreters: a detailed sociolinguistic analysis. J Gen Intern Med 2006;21: 623–9.

Bass J.B. Epidemiology of tuberculosis. UpToDate2007. Available at: http://www.uptodate.com.

Bass J.B. Treatment of latent tuberculosis infection in HIV-negative patients. UpToDate2007. Available at: http://www.uptodate.com.

Bass J.B. Tuberculin skin testing and other tests for latent tuberculosis infection. UpToDate2007. Available at: http://www.uptodate.com.

Blumberg H.M., Burman W.J., Chaisson R.E. American Thoracic Society/Centers for Disease Control and Prevention/Infectious Diseases Society of America: treatment of tuberculosis. Am J Respir Crit Care Med 2003; 167:603.

Carrillo J.E., Green A.R., Betancourt J.R. Cross-cultural primary care: a patient-based approach. Ann Intern Med 1999;130:829–34.

Chen A. Doctoring across the language divide. Health Aff 2006;25:808–13.

DeReimer K., Chin D.P., Schecter G.F., Reingold A.L. Tuberculosis among immigrants and refugees. Arch Intern Med 1998;158:753–60.

Dysart-Gale D. Communication, models, professionalism, and the work of medical interpreters. Health Commun 2005;17:91–103.

Flores G. The impact of medical interpreter services on the quality of healthcare: a systematic review. Med Care Res Rev 2005;62:255–99.

Hsieh E. Conflicts in how interpreters manage their roles in provider-patient interactions. Soc Sci Med 2006;62:721–30.

Hsieh E. Understanding medical interpreters: reconceptualizing bilingual health communication. Health Commun 2006;20:177–86.

Institute of Medicine, Committee on Elimination of Tuberculosis in the United States. In: Geiter L.J., ed. Ending Neglect: The Elimination of Tuberculosis in the United States. Washington DC, National Academy Press, 2000.

Kleinman A., Eisenberg L., Good B. Culture, illness, and care: clinical lessons from anthropological and cross-cultural research. Ann Intern Med 1978;88: 251–88.

Kulkarni S.P., Alexander K.P., Lytle B., Heiss G., Peterson E.D. Long-term adherence with cardiovascular drug regimens. Am Heart J 2006;151:185–91.

Osterberg L., Blaschke T. Adherence to medication. N Engl J Med 2005; 353:487–97.

Romero C.M. Using medical interpreters. Am Fam Physician 2004;69:2720–2.

White H.D. Adherence and outcomes: it’s more than taking the pills. Lancet 2005;366:1989–91.