Bogaert B
Healthcare Values Chair, Institut de Recherches Philosophiques de Lyon, Université Jean-Moulin 3, Lyon, France; Laboratory S2HEP, UR 4148, Université de Lyon, Université Lyon 1, Lyon, France; Department of Human and Social Sciences, Centre Léon-Bérard, Lyon, France.
Rev Neurol (Paris). 2023 Apr;179(4):345-351. doi: 10.1016/j.neurol.2023.02.065. Epub 2023 Mar 10.
In the age of patient participation, ethics are more important than ever to help guide clinicians in situations of uncertainty. Principles of Biomedical Ethics by James F. Childress and Thomas L. Beauchamp remains the most important reference in medical ethics. In their work, they conceptualize four principles designed to help guide clinicians in decision making, notably beneficence, non-maleficence, autonomy, and justice. While using ethical principles dates back to at least Hippocrates, the introduction by Beauchamp and Childress of the principles of autonomy and justice have helped to deal with new challenges. This contribution will discuss how the principles can help elucidate issues of patient participation in epilepsy care and research using two case studies. METHODS: In this paper, we will discuss the equilibrium to be found between two principles (beneficence and autonomy) in the context of emerging debates in epilepsy care and research. The methods section details the specificities of each principle and their relevance to epilepsy care and research. RESULTS AND DISCUSSION: Using two case studies, we will explore the potential and limits of patient participation and how the ethical principles may help to provide nuance and reflection in this emerging debate. First of all, we will explore a clinical case which involves a conflictual situation with the patient and family about psychogenic nonepileptic seizures. We will then discuss an emerging issue in epilepsy research, namely the integration of persons with severe refractory epilepsy as patient research partners.
在患者参与的时代，伦理对于帮助临床医生应对不确定性情况比以往任何时候都更加重要。詹姆斯·F·奇尔德雷斯和托马斯·L·博尚所著的《生物医学伦理学原理》仍是医学伦理学中最重要的参考文献。在他们的著作中，他们提出了四条旨在帮助指导临床医生进行决策的原则，即行善原则、不伤害原则、自主原则和公正原则。虽然使用伦理原则至少可以追溯到希波克拉底时代，但博尚和奇尔德雷斯引入的自主原则和公正原则有助于应对新的挑战。本论文将通过两个案例研究来探讨这些原则如何帮助阐明患者参与癫痫护理和研究的问题。方法：在本文中，我们将在癫痫护理和研究的新争议背景下，讨论两条原则（行善原则和自主原则）之间的平衡。方法部分详细阐述了每条原则的具体内容及其与癫痫护理和研究的相关性。结果与讨论：通过两个案例研究，我们将探讨患者参与的潜力和局限性，以及伦理原则如何在这场新出现的争议中提供细微差别和思考。首先，我们将探讨一个临床案例，该案例涉及与患者及其家属在关于精神性非癫痫发作问题上的冲突情况。然后，我们将讨论癫痫研究中的一个新问题，即将重度难治性癫痫患者纳入患者研究伙伴的情况。
