Patient and Family Descriptions of Ethical Concerns

American Journal of Bioethics 20 (6):52-64 (2020)

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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 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.
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DOI 10.1080/15265161.2020.1754500
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Citations of this work BETA

The Moral Distress of Patients and Families.Connie M. Ulrich - 2020 - American Journal of Bioethics 20 (6):68-70.
The Genetic Family as Patient?Bartha Maria Knoppers & Kristina Kekesi-Lafrance - 2020 - American Journal of Bioethics 20 (6):77-80.

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