An Exploration of Palliative Care Services in Two Palliative Care Facilities in Indonesia: An Ethnographic Study

Abstract

Background: Patients at end of life and their families have complex needs that require comprehensive care. Along with pain and physical symptoms, psychological, social and spiritual needs have been identified in the literature. Historically palliative care services have been developed for some time in well-resourced countries, the development of these services particularly in low resource countries has been more recent and as result may be less developed. In Indonesia, formal palliative care services have been established since the 1990s to provide care for patients and families mainly with cancer. As models of palliative care were first developed in well-resourced western countries there is a need to explore if the ongoing growth of palliative care in the developing countries, such as in Indonesia, is culturally appropriate. This study sought to explore the current provision of palliative care for cancer patients to describe, understand, provide insight and explore the implications for provision of culturally appropriate palliative care services. The central research question guiding this study was ‘What is the current practice of palliative care services in two facilities in Indonesia?’ Methodology and methods: Contemporary ethnography based on interpretive and post-positive paradigm was adopted to undertake this study incorporating multiple methods of data collection and analysis. Observations was conducted in the hospital-based palliative care; interviews and collection of relevant documents were undertaken in both facilities; a survey questionnaire explored the perceptions and satisfaction of patient’s relatives. Findings and discussions: Multiple methods of data collection with palliative care staff, palliative care patients and their relatives gave in-depth insight into the phenomena under investigation. The culture of palliative care provision was described as having many challenges relating to the patient’s complex needs while maintaining his/her dignity. Some of interventions offered or employed by the palliative care team may be viewed as being unnecessary or even aggressive care for patients at end of life. The patients were primarily being cared for in their own home. As a result the family played significant role in providing care for the patients. The cultural context also suggested that local community support was an additional important feature in the palliative care provision. Spirituality/religiosity was identified as central to daily life for the patients, the family and the palliative care staff in this study and became a significant element in the palliative care provision. This study showed that all the cultural actors (the palliative care team, the patients and the relatives) were affiliated to particular religions and performed their religious practices in their daily life. It was also observed that the patient’s relatives in this study commonly acknowledged and addressed the patient’s needs for spiritual care. The palliative care staff provided support for spiritual care of the patients (e.g. religious/spiritual discussion, conducting prayers together). In return the patients and relatives supported the health professionals to perform worship in their home. A particular cultural issue emerged in this study around discussions about end of life. Discussions between the palliative care team and the patient’s relatives were overt and frank. However, discussions about impending death between the palliative care team and the patients, where often oblique at best or even not discussed. Conclusion: This study has provided a more comprehensive understanding of the cultural aspects of palliative care provision in two facilities in Indonesia. Challenges identified in the care provision included late referral, interventions employed by the palliative care team that might be perceived as unnecessary care and the complexity of care. Supporting factors included family and community involvement and spirituality has a significant role in the provision of palliative care.