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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患者和家属对道德问题的描述。


在疾病和医疗保健过程中经常会出现道德上具有挑战性的情况。然而，很少有研究调查患者和家庭成员在道德上具有挑战性的情况下的经历。为了解决文献中的这一空白，我们对三家医院的患者及其家属进行了调查。我们对他们对开放式问题的回答进行了内容分析，这些问题涉及他们最难忘的经历以及对他们或其家庭成员的道德关注。参与者 (N = 196) 描述了 219 种独特的伦理体验，涵盖了生物伦理学的许多流行主题，包括医患关系、临终关怀、决策能力、医疗保健成本和基因检测。参与者重点讨论了患病和接受医疗过程中的关系问题以及对医患关系的担忧。许多担忧出现在医疗保健环境之外。这些数据表明医疗保健提供者需要改进的领域，但一些问题可能在传统医疗保健环境之外得到更好的解决。