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Published online July 27, 2009
PEDIATRICS Vol. 124 No. 2 August 2009, pp. e322-e328 (doi:10.1542/peds.2008-3227)
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ARTICLE

Impact of Ethics and Economics on End-of-Life Decisions in an Indian Neonatal Unit

Ingrid Miljeteig, MDa, Sadath Ali Sayeed, JD, MDb, Amar Jesani, MBBSc, Kjell Arne Johansson, MDa, Ole Frithjof Norheim, MD, PhDa

a Division of Medical Ethics, Department of Public Health and Primary Health Care and Global Health: Ethics, Economics and Culture, Centre for International Health, University of Bergen, Bergen, Norway
b Division of Medical Ethics, Harvard Medical School, Program in Ethics and Health, Harvard University, Division of Newborn Medicine, Children's Hospital Boston, Boston, Massachusetts
c Centre for Studies in Ethics and Rights, an Institute of Anusandhan Trust, Mumbai, India

OBJECTIVE: The aim of this article was to describe how providers in an Indian NICU reach life-or-death treatment decisions.

METHODS: Qualitative in-depth interviews, field observations, and document analysis were conducted at an Indian nonprofit private tertiary institution that provided advanced neonatal care under conditions of resource scarcity.

RESULTS: Compared with American and European units with similar technical capabilities, the unit studied maintained a much higher threshold for treatment initiation and continuation (range: 28–32 completed gestational weeks). We observed that complex, interrelated socioeconomic reasons influenced specific treatment decisions. Providers desired to protect families and avoid a broad range of perceived harms: they were reluctant to risk outcomes with chronic disability; they openly factored scarcity of institutional resources; they were sensitive to local, culturally entrenched intrafamilial dynamics; they placed higher regard for "precious" infants; and they felt relatively powerless to prevent gender discrimination. Formal or regulatory guidelines were either lacking or not controlling.

CONCLUSIONS: In a tertiary-level academic Indian NICU, multiple factors external to predicted clinical survival of a preterm newborn influence treatment decisions. Providers adjust their decisions about withdrawing or withholding treatment on the basis of pragmatic considerations. Numerous issues related to resource scarcity are relevant, and providers prioritize outcomes that affect stakeholders other than the newborn. These findings may have implications for initiatives that seek to improve global neonatal health.

Key Words: ethics • infant • newborn • decision-making • social determinants of health • India

Abbreviations: GA—gestational age • DAMA—discharged against medical advice

Accepted Mar 12, 2009.


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