The Right Not to Know: Exploring the Attitudes of Older Iranian Immigrants about Medical Disclosure of Terminal Illness

Background and Purpose:

Health care providers in America have legal and ethical responsibilities to disclose a diagnosis of terminal illness to their patient, no matter how painful the news may be to the patient. The literature reveals that the desire to know about terminal illness is not shared by all people. As noted by Brotzman and Butler (1991), "All cultures do not share Western views on the positive value of disclosure" (p. 426). Studies have shown cultural differences in attitudes toward disclosure of a diagnosis of terminal illness. Few studies have explored patients' preferences for disclosure of unfavorable medical information (Walsh, Girgis, & Sanson-Fisher, 1998). Despite the large number of Iranian immigrants in the United States, little research has been conducted concerning the health related attitudes and practices of this population (Jalali 1982, Lipson, & Meleis, 1983, Lipson, 1992, Pliskin, 1992, Ghaffarian, 1998). Research on the health of older Iranian immigrants in the U.S. is even more scarce. Salari (2002) described older Middle Eastern immigrants as “invisible” in the aging literature.

This study aimed to explore 1) the attitudes of older Iranian immigrants about disclosure of terminal illness by health care providers, 2) how attitudes about medical disclosure of terminal illness may influence the care seeking behaviors of older Iranian immigrants in the U.S.?

Design and Methods: Using a phenomenological methodology, in-depth, semi-structured interviews were conducted with 15 older Iranian immigrants. Sampling was purposive, which is compatible with phenomenological methodology, as it facilitates access to information-rich cases (Patton, 1990). The criteria for participation were: being Iranian immigrants and having migrated to the United States after the age of 50. Using the data analysis methodology developed by Colaizzi (1978), significant statements that pertained to each category were extracted, while duplicated statements were eliminated. Meaning units were formulated from these statements by constant comparison between the English and Persian transcripts, as well as frequent review of the audio-tapes. Meanings were considered in both linguistic and cultural contexts. These meaning units were then organized into themes that were compared, contrasted (between and within cases), and sorted until thematic saturation was reached (Creswell, 1998).

Findings: The major themes that emerged were: 1) preferences for delivery of bad news, 2) the right not to know, 3) treat me without scaring me to death, 4) strength of the heart (quvvat-I qalb).

Conclusions and Implications: The participants' desire to not know about terminal illness was demonstrated by their reluctance to seek preventive care as well as an equal reluctance to seek care when a serious illness was suspected. Although many patients may like to know the truth about their diagnosis, the rights of those who do not want to know should also be respected. If a blanket policy of full disclosure is applied to all patients, then the medical principle of primum non nocere (do no harm) may be threatened (Schofield, et al, 2003).