Home palliative care in Indonesia An ethnographic study of family involvement and local values

The increasing burden of non-communicable diseases and an aging population in Indonesia have led to increased palliative care needs. However, its provision remains limited and varies locally. According to the global palliative care atlas, Indonesia offers only limited palliative care, which is unevenly distributed. About 80.8% of care is provided by family members. Moreover, there are ethical issues that arise concerning patient-family communication, family support, cultural or spiritual considerations. The role of local ethical values is under-explored.
This thesis addresses two main questions: (1) How do Indonesian health professionals, family caregivers, and patients practice palliative care at home? (2) What local values are important and enacted in these practices? To answer these questions, I conducted ethnographic research in Banyumas, Central Java. The study reveals both similarities and differences between broader regional practices and local experiences. I emphasize the fruitfulness of  mutual learning rather than of prescribing universal models of care. I identified key values identified in home palliative care practices; these include the Javanese-Islamic values of ‘making an effort’ (ikhtiar), sincerity (ikhlas), surrender (pasrah), and implicit communication. The understanding of these interconnected values can support the  improvement of palliative care practices. In conclusion, I recommend integrating home palliative care into existing public health programs. I recommend that health professionals expand their knowledge of local values and how to negotiate these. It would be helpful to inquire about mental wellbeing of patients and their family members. The findings of this study provide a ‘conversation starter kit’ that may foster cultural humility.