Die, Die Must Live?: An Institutional Ethnography of Palliative Care in Singapore

Are Singaporeans potentially at risk of being prematurely streamed into palliative care, not because it is the optimal form of care that aligns with their goals, but due to the lack of affordability for curative treatment? If so, what is the impact on patients with life-limiting illnesses and their caregivers, revolving around decision-making for end-of-life (EOL) care? Grounded in institutional ethnography (IE), this paper addresses knowledge gaps surrounding the work of EOL decision-making and transitioning to palliative care. Adopting the standpoint of EOL patients and caregivers, dimensions of financial suffering and its impact on palliative care and decision-making are uncovered.

Findings combining year-long fieldwork among patients, caregivers, palliative care physicians, nurses, medical social workers and policymakers, with the lived experience of the researcher as a caregiver will be presented. Methods consist of; text-based analyses of policy, means-testing and medical savings account documents, ethnographic observation at more than 10 events, seminars, workshops, site visits and conferences, an initial round of semi-structured in-depth interviews with 10 physicians, nurses, medical social workers, caregivers and policy contributors outlining the clinical and policy landscape of EOL care, and a final round of semi-structured in-depth interviews with 5 patient and/or caregiver dyads and members of their clinical care team. By outlining EOL decision-making as textually coordinated work, ruling relations which govern the healthcare financing structure are revealed.

These findings are synthesized in the form of a publicly accessible and navigable map (https://miro.com/app/board/uXjVNHBPXEo=/) that highlights differential access to the healthcare system and tiered subsidization. By tracing different care trajectories, the map outlines how healthcare is regulated for different classes of citizens, particularly EOL patients frequently deemed as economically unproductive. Results also demonstrate how healthcare subsidies affect decision-making and access to treatment and EOL care for citizens from different income groups, and cartographically illustrates processes underpinning health inequity.