Informing patients about cancer in Nepal: what do people prefer?

Abstract

Introduction: Traditionally, doctors in Nepal do not discuss a diagnosis of malignancy with their patient. Instead, discussion is more likely to take place with family members, who then filter the information that the patient receives. This study aims to quantify the amount of actual disclosure of a cancer diagnosis that takes place, through a survey of patients admitted for hospice care, and to compare this with preferences regarding cancer disclosure from a survey of the general population. Objectives: (a) To determine what proportion of patients, referred for hospice care with advanced cancer, who were aware of their disease and prognosis. (b) To determine the attitude among the public toward disclosure of information of a diagnosis of malignancy, if they or a close relative were to develop the disease. (c) To observe if educational attainment impacts on issues related to disclosure of a cancer diagnosis. Method: (a) Prospective survey of patients with cancer admitted to ‘Hospice Nepal’ over a one-year period, recording details of how much patients knew of their diagnosis. (b) Survey of the general population in and around the Kathmandu valley, with a questionnaire asking the following two questions: If you were diagnosed with cancer would you like to be informed of your cancer? If a close relative was diagnosed with cancer would you like them to be informed of their cancer? Results: A survey of the 96 patients admitted to ‘Hospice Nepal’ over the one-year study period showed that 19 (20%) of the patients had knowledge of both their disease and the stage of the disease; 16 (17%) knew that they had cancer but did not know about their disease progression or prognosis; 61 (63%) were unaware of the nature, seriousness or prognosis of their disease. A survey of the general population in Kathmandu showed 204 (80%) of the 256 respondents wanted to be informed if they were diagnosed with cancer, even if it was incurable; 44 (17%) wanted to be informed of such a diagnosis only if it was curable; and 8 (3%) did not want to be informed of such a diagnosis at all. Conclusion: In Nepal, there is a clear disparity between what patients would like to be told should they develop cancer, and what patients with cancer know about their disease. In the Asian context, it is not unusual to be advised that western practices of disclosure are inappropriate, yet this study, conducted in a very non-western culture, shows that the patient’s wish to know about their illness is a desire which can transcend cultural and ethnic differences.