The QALY is ableist: on the unethical implications of health states worse than dead

INTRODUCTION: A long-standing criticism of the QALY has been that it would discriminate against people in poor health: extending the lives of individuals with underlying health conditions gains fewer QALYs than extending the lives of ‘more healthy’ individuals. Proponents of the QALY counter that this only reflects the general public’s preferences and constitutes an efficient allocation of resources. A pivotal issue that has thus far been overlooked is that there can also be negative QALYs. METHODS AND RESULTS: Negative QALYs are assigned to the times spent in any health state that is considered to be worse than dead. In a health economic evaluation, extending the lives of people who live in such states reduces the overall population health; it counts as a loss. The problem with this assessment is that the QALY is not based on the perspectives of individual patients—who usually consider their lives to be well worth living—but it reflects the preferences of the general public. While it may be generally legitimate to use those preferences to inform decisions about the allocation of health care resources, when it comes to states worse than dead, the implications are deeply problematic. In this paper, I discuss the (un)ethical aspects of states worse than dead and demonstrate how their use in economic evaluation leads to a systematic underestimation of the value of life-extending treatments. CONCLUSION: States worse than dead should thus no longer be used, and a non-negative value should be placed on all human lives.