Preference for initiation of end-of-life care discussion in Indonesia: a quantitative study

BACKGROUND: Initiating discussion about death and dying is often considered a difficult topic for healthcare providers, thus there is a need for further research to understand this area, particularly in developing countries. The aim of this study was to describe preferences for the initiation of end-of-life care discussions in Indonesia, comparing the general population and health care professionals. METHODS: This cross-sectional, descriptive study analysed quantitative data from 368 respondents to an online questionnaire (255 general population (69%); 113 healthcare professionals (31%)) utilizing consecutive sampling and snowball sampling methods. RESULTS: Overall, most respondents (80%) stated that they would like to discuss end-of-life issues with a healthcare professional in the case of terminal illness. This was more marked amongst healthcare professionals compared with the general population (94% vs. 75%, respectively, p < 0,001). The preferred time for discussion was at first diagnosis (68% general population, 52% healthcare professionals, p = 0.017) and the preferred person to start the discussion was the doctor (59% general population, 71% healthcare professionals, p = 0.036). Fewer respondents wanted to know about prognosis compared to diagnosis (overall 76% v 93% respectively). CONCLUSION: Doctors have vital role in end-of-life care discussion, and attempts should be made to encourage physicians to initiate these conversations and respond to patient’s requests when needed. These findings contribute to the existing body of knowledge in this area of practice, with focus on a developing country. The role of socio-cultural influences on these conversations warrants further research, in order to develop practical resources to support clinicians to appropriately conduct end-of-life care discussions with their patients and to provide data for policymakers to develop services. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-021-00894-0.