Opportunities and challenges for formalizing community-based palliative care volunteer work: An ethnographic study

The provision of community-based palliative care is widely recognized as an effective strategy for improving the end-of-life care. Given that both national and international policies increasingly advocate the integration of community-based palliative care programs into broader public health systems, those programs that are often rooted in grassroots movements and mostly run through informal volunteer networks are expected to move toward greater formalization.

This study aims to understand how individuals involved in community-based palliative care perceive the movement toward formalizing volunteer work and to identify the opportunities and potential challenges of formalizing community-based palliative care.

This study employed an ethnographic design grounded in qualitative research methods.

Data were collected during 8 months of ethnographic fieldwork in Jakarta, the capital of Indonesia, in 2022, with a follow-up visit in 2023. The fieldwork entailed prolonged participant observation, focus group discussions, and semi-structured interviews with 14 palliative care volunteers and 6 NGO workers.

This study reveals that palliative care volunteers hold diverse perspectives on the definition of formalization, ranging from the introduction of visible markers (e.g., uniform and identity cards), to the establishment of institutional features (e.g., financial incentives, recognition within the health system, and administrative structures). The opportunities associated with formalization include strengthening volunteers' legitimacy and recognition in the health system and increased financial rewards. The challenges include concerns about its impact on the spiritual and altruistic nature of volunteer work, increased bureaucratic responsibilities, changes to existing care practices, and concerns about navigating the language of palliative care.

As community-based palliative care becomes increasingly formalized, it is important to understand how this process unfolds across different regions and cultural contexts, and to identify strategies to preserve the unique strengths of volunteer-based care as these formal structures are introduced.