Accessibility of information and informed consent: experiences of breast cancer patients

We studied the social and cultural frameworks that impact on breast cancer patients in the medical system. The subjects were 98 Jewish women who had undergone mastectomy or lumpectomy for cancer 6 months to 3 years prior to the interview. They emanated from a variety of socioeconomic and ethnic backgrounds, and reflected the age range of women with breast cancer in the general Jewish population of Israel. Patients were asked about each stage of the medical process they had experienced: diagnosis, surgery, oncological care, and follow-up care. The interview revealed a general perception of having received insufficient information regarding their medical condition and treatment. The problem tended to be most severe during the diagnostic stage, when women had not yet been officially included as patients within the system. The problem was relatively severe during follow-up care, when they often did not have an address for their questions. Few women received a schedule of follow-up care that allowed them to carry on with the many necessary tests in an orderly and comprehensive manner. Most important, systematic absence of informed consent also characterized the decision-making process regarding surgery and oncological treatment. Few women felt they had been informed about treatment options, side-effects, or long-term implications of the treatment offered. We found no indication of inequitable medical treatment that would suggest a manifest pattern of discrimination, but we did find some social variables related to a feeling of insufficient personal care and information. In particular, older women said they received less attention, support, and information from the medical staff relative to the younger women.