Why are states worse than being dead overlooked in healthcare policymaking? An ethnographic examination

Abstract

This article investigates why states considered "worse than being dead" (SWD) are largely overlooked in healthcare decision-making frameworks that are based on Healthcare Technology Assessment (HTA) and/or Quality Adjusted Life Years (QALY). Despite scholarly and popular recognition of SWD in Euro-American societies, these states remain a marginal consideration in HTA and QALY-based procedures. Drawing on ethnographic research in two case studies—the Israeli Public National Advisory Committee (PNAC), responsible for determining public healthcare coverage, and a U.S.-based research center developing QALYs—this paper offers an initial mapping of the barriers to including SWD in policymaking.

Findings reveal four key barriers: (1) fear of death and health deterioration among decision-makers, (2) ethical imperatives prioritizing life extension, (3) pharmaceutical companies' lack of financial interest in researching SWD, and (4) the principle of simplicity that underpins health economic models and decision-making tools.

This study highlights how institutional priorities and epistemic practices shape what is considered relevant knowledge in health policymaking, complicating efforts to integrate SWD considerations. Addressing this gap requires reconfiguring funding incentives and rethinking methodological approaches to accommodate the complexity of SWD while adhering to the operational simplicity demanded by policy tools.