Hidden in Plain Sight: Stigmatizing Language in Patient Medical Records

Johns Hopkins University, Baltimore MD

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Abstract

ABSTRACT Patients are not treated equally in our healthcare system. Those from marginalized racial/ethnic groups, older adults, and individuals with low health literacy, obesity, sickle cell disease, and substance use disorders are often viewed negatively by health professionals in a way that adversely impacts their healthcare quality. While many contributors to such disparities, bias among clinicians toward patients is one important factor. The overarching goal of the parent study is to improve the quality and equity of care for persons who are disrespected and/or stigmatized in healthcare. The parent study specific aims are to (1) develop a taxonomy of stigmatizing language in medical records, (2) measure and test for bias in the use of such language, and (3) reduce its use. The central premise of this supplemental proposal is that this lack of respect for patients, and the resultant stigmatizing language that appears in their medical records, is facilitated by an insufficient set of bioethical and professional norms that fail to describe fully the moral obligation clinicians have to respect patients as persons. For nearly half century, the ethical education of health professionals has been dominated by Beauchamp and Childress's Principles of Biomedical Ethics, first published in 1979 and now on its 8th edition. Beauchamp and Childress do not endorse the view that respect is morally owed to all patients; they write, “Obligations to respect autonomy do not extend to persons who…are immature, incapacitated, ignorant, coerced, exploited, or the like… drug- dependent patients are examples.” Our parent study provides a unique opportunity to holistically explore clinician, patient, and bioethicist perspectives on the principle of respect for persons. Our overall goal is to provide clinicians with a rich conception of respect for patients as persons that can guide clinical practice, informed by those who are marginalized. Our specific aims are (AIM 1) To qualitatively explore the moral beliefs, values, and reasoning of 30 patients about the nature of respect in response to different categories of stigmatizing language found in medical records. Patients most at risk of being disrespected in healthcare will be oversampled. (AIM 2) To qualitatively explore the moral beliefs, values, and reasoning of 30 clinicians about the nature of respect in response to different categories of stigmatizing language found in medical records. Clinicians will be selected to maximize variability across age, gender, and specialty, while oversampling those who are underrepresented in the health professions. (AIM 3) To convene an expert panel of bioethicists to review the patient and clinician perspectives elicited in Aims 1 and 2, in the context of other related texts, and to apply the framework of reflective equilibrium in the formulation of a robust conception of the moral obligation to respect patients as persons. This supplemental ethics proposal aims to address both priorities of the NIH Office of Science Policy (research on bioethical issues that may inform future policy directions, and capacity-building in bioethics), and specifically addresses a form of structural racism that exists within the bioethics community, one which consistently and silently undermines our efforts to mitigate inequities in healthcare.