Life Sustained or Death Standardized? Novel Mechanisms in the Reproduction of Inequality

• In Event: Ethical Issues in Biomedical Research, Health Policy, and Clinical Practice – I

Abstract

This paper explores how diverse individuals pursue and experience different health care outcomes at the end of life, and how and when those differences become disparities. Specifically, it examines the novel pathways in which inequalities emerge when patients and their families disagree with clinicians about end-of-life health care. While most clinicians have accepted a turn towards limiting life-sustaining treatments at the end of life, some of the public, and greater proportions of socially disadvantaged groups, have not. Drawing on six months of ethnographic observations in an ICU and follow-up interviews with patients’ family members, I find that the reproduction of inequality occurs through two mechanisms largely unexplored in the health and health care disparities literature – in valuation, as the attitudes and values of the socially disadvantaged are challenged, questioned, and ignored – and in standardization, as the outcomes preferred and chosen by less socially advantaged groups are defined as poorer and crystallized in formal policies. I argue that inequality is produced in part because socially advantaged groups are more likely to shape what “good medicine” entails and therefore medical institutions - and clinical standards - reflect their cultural preferences or tastes.

Author

• Katrina Hauschildt, Univ. of Michigan