663“To tell or not to tell...” Practice of (non)disclosure and collusion of cancer in India

Abstract

Abstract Introduction Collusion and concealing cancer diagnosis is often practiced in India. To get more insights on the perception and practice of disclosing cancer diagnosis, a qualitative study was conducted in south India. Methods In-depth interviews were conducted separately among women diagnosed with breast cancer and their caregivers. Prior permissions from hospital administration and ethical clearance was obtained. Using purposive sampling, 39 caregivers and 35 women diagnosed with breast cancer were recruited from tertiary care hospital. Results Families practiced collusion so as to protect the patient from emotional consequence viz. shock, fear of death and uncertainty about prognosis and treatment. This practice was more common among families who had patient with advanced stage of illness and/or 49 years of age and above. Collusion was mostly seen among Participants concealed the cancer diagnosis from social contacts such as extended family, friends and neighbor. Resultant codes pertaining to nondisclosure were; ‘too many questions’, ‘avoid courtesy visits’, ‘negative suggestions’, ‘perceived stigma’, ‘obstacle in child’s marriage’, and ‘shock’. Conclusions Disclosing cancer diagnosis is considered as ‘bad news’ however, withholding information about health status of patient is not ethically appropriate. Additionally, nondisclosure resulted in diminished support from social contacts. Concordance between cancer diagnosis and patients’ ability to deal with the information is important. Key messages Although nondisclosure of cancer diagnosis and prognosis violates patient autonomy, it was perceived to be beneficial for the patient. A pragmatic disclosure strategy complemented with tailored counselling would be a feasible paradigm.