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Patient and Family Descriptions of Ethical Concerns
Authors:Hae Lin Cho  Christine Grady  Anita Tarzian  Gail Povar  Jed Mangal
Affiliation:1. National Institutes of Health;2. University of Maryland School of Law, Law and and Nursing;3. George Washington University Hospital;4. Walter Reed National Military Medical Center
Abstract:Abstract

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants (N?=?196) described 219 unique ethical experiences that spanned many of the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting.
Keywords:Ethics  clinical  surveys and questionnaires  patients  family  qualitative research
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