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.

中文翻译：

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道德问题的患者和家庭描述。

在疾病和医疗保健过程中，通常会出现具有伦理挑战性的情况。但是，很少有研究针对患者和家庭成员在道德挑战性情况下的经历进行调查。为了弥补文献中的这一空白，我们对三家医院的患者及其家庭成员进行了调查。我们对他们对他们最难忘的经历的开放式问题的回答进行了内容分析，并从道德上关注了他们或他们的家人。参与者（N = 196）描述了219种独特的伦理经验，涵盖了许多主要的生物伦理学主题，包括患者与医师的关系，临终关怀，决策能力，医疗保健成本和基因检测。参加者着重于患病和接受医疗护理过程中的关系问题，以及对患者与医师接触的关注。在医疗机构之外引起了许多关注。这些数据表明了医疗保健提供者有待改进的地方，但在传统医疗保健环境之外可能会更好地解决一些问题。