Ethical Care in the Context of Constrained Choices

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

Abstract

The experience of negotiating ethical clinical care is fraught with many uncomfortable decisions between the knowledge of optimal standards of care and the realities of inequities in healthcare and larger structural systems. The purpose of this paper is to offer a case study of how clinicians confront decisions to alter medical recommendations based on the reality of constrained choices for people who rely on public health insurance, live in “therapeutic deserts,” and/or have limited cultural health capital. Based on a two-year ethnography in a community-based autism clinic in the U.S. South and interviews with autism clinical professionals and caregivers who received services at the clinic for their child, this paper explores the ethical decisions clinicians face on a daily bases when they are confronted with making rationalized service and therapeutic recommendations for children with autism whose family do not have the time, resources, and social and cultural capital to negotiate the biomedical accountabilities needed to fully benefit from therapy regimens. In this particular case I show how these ethical decisions weigh heavily on clinicians during their daily clinical interactions with patients, which requires negotiating the recommendation of treatment and services that are or are not in the realm of possibility. This clinical ethnography contributes to STS by not only offering ethical considerations from clinical stakeholder perspectives but also exemplifies how one clinician challenged these constraints by developing programs that support vulnerable caregivers, as well as training programs designed to promote research on health disparities among children with developmental disabilities.

Author

• Jennifer S Singh, Georgia Institute of Technology