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与肌萎缩侧索硬化症患者讨论依达拉奉:从美国视角看伦理框架

Discussing edaravone with the ALS patient: an ethical framework from a U.S. perspective.

作者信息

Yeo Crystal Jing Jing, Simmons Zachary

机构信息

a Department of Neurology , Houston Methodist Hospital , Houston , TX , USA.

b Department of Neurology , The Pennsylvania State University College of Medicine , Hershey , PA , USA , and.

出版信息

Amyotroph Lateral Scler Frontotemporal Degener. 2018 May;19(3-4):167-172. doi: 10.1080/21678421.2018.1425455. Epub 2018 Jan 15.

Abstract

The recent approval of edaravone by the United States Food and Drug Administration has generated a mix of hope tempered by reality. The costs of the drug, both monetarily and with regard to intensity of treatment, are high. The benefits, while modest, will be viewed through a very different lens by individuals depending on their goals of care. By virtue of our training and experience, physicians are ideally suited to understand and explain new treatments to our patients. As healthcare providers with a fiduciary responsibility to our patients, we must make sure they are fully informed about both the costs and benefits of non-curative therapies such as edaravone, and be prepared to discuss these in the context of their goals of care and potential impact on quality of life. Respect for our patients' autonomy is critical when discussing these issues, but we should always be guided by the ethical principles of beneficence and non-maleficence.

摘要

美国食品药品监督管理局最近批准了依达拉奉,这带来了希望,但也夹杂着现实的考量。这种药物的成本,无论是金钱方面还是治疗强度方面,都很高。其益处虽然不大,但不同的个体根据自身的护理目标会有截然不同的看法。凭借我们的培训和经验,医生非常适合向患者理解和解释新的治疗方法。作为对患者负有信托责任的医疗服务提供者,我们必须确保患者充分了解依达拉奉等非治愈性疗法的成本和益处,并准备好在其护理目标及对生活质量的潜在影响的背景下进行讨论。在讨论这些问题时,尊重患者的自主权至关重要,但我们应始终以行善和不伤害的伦理原则为指导。

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