Influence of Culture and Language: Decision-making in Breast Cancer Patients
Bushra Shirazi
Consultant Breast Surgeon, SIUT and faculty CBEC
Volume 7 Issue 2 December 2011
Contemporary bioethics places a great deal of emphasis on the patient’s autonomy, important aspects of which include complete disclosure about the disease, and the patient’s right to make informed decisions about therapy. However, the extent of information imparted to patients may differ in various cultures. With the objective of exploring the influence of local culture on the disclosure of illness and subsequent decision-making, I conducted an empirical study in a Karachi hospital on women diagnosed with breast cancer. My study included detailed interviews with twenty four patients as well as with the female surgeon involved in their care.
One of the most interesting findings that emerged from my study was the use of language by patients and doctors. Patients I interviewed generally avoided the word “cancer” and, if the word came up during discussion, from using it as ‘first person’ statements. Therefore they would say that “the disease was cancer” instead of “I have cancer.” The terms commonly used instead of “cancer” included bimaari (illness), rasoli (a generic word for a mass) or yeh cheez (this thing), while some patients called it a khatarnak bimaari (dangerous illness). Two patients disclosed that family members also avoided using the word cancer. One respondent expressed her annoyance at being called a “cancer patient” by junior doctors, something she said “senior” doctors did not do. In her opinion, though this word may be routine for doctors, it magnified the stress and fear of the patient. She narrated that when the oncologist asked her outright if she knew what her disease was and told her that she had cancer, she burst into tears.
Others believed that the disclosure of cancer could kill the patient. In one case where the patient could not speak Urdu, her daughter (who was acting as interpreter) told me that she used the word rasoli (tumor) to refer to the cancer, and had informed her mother that “a small operation” was required. Following surgery, when the mother realized that her breast had been removed, the daughter told her that it was done to prevent the rasoli from spreading. When I enquired if this was not deception the daughter replied, “This disease is life-threatening. But the disease does not kill a person as quickly as telling someone that your death is on its way.”
Hufeland (1762-1836) said that “to prophesy death is to cause it.” My study suggests that as the word cancer was interpreted as imminent death by some using euphemisms like illness or tumor may serve as a mechanism to distance the disease from death. The consulting surgeon I interviewed confirmed the taboos surrounding the word cancer, and said that the word she too routinely uses to patients is rasoli (tumor). In her experience with patients she said, “once the word cancer is used the [patient’s] mind goes numb.” She said that somewhere during multiple visits the word cancer may be mentioned, but not always.
My interviews revealed that avoiding the word cancer does not imply that patients were ignorant of the diagnosis. A patient told me, “Nobody said the word but I just knew.” It seemed to me that although patients understood the malignant nature of their disease, it was considered emotionally and psychologically important to use words that “softened” the impact of the diagnosis and perhaps maintained a sense of hope. Interestingly, my study has led me to reflect on my own use of language as a surgeon, and a realization that I too often avoid the word cancer when speaking with my patients.