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关怀伦理、关系性痛苦与有争议的隐形残疾

An Ethics of Care, Relational Suffering, and Contested Invisible Disability.

作者信息

Christopoulos Téa, Peter Elizabeth

机构信息

Faculty of Kinesiology and Physical Education, University of Toronto, 55 Harbord Street, Toronto, Ontario, M5S 2W6, Canada.

Lawrence Blomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, Ontario, M5T 1P8, Canada.

出版信息

J Bioeth Inq. 2025 Feb 13. doi: 10.1007/s11673-024-10416-1.

Abstract

Suffering is an elusive aspect of healthcare, erroneously assumed to be located solely within the patient in the clinical encounter-an assumption that fails to acknowledge the pervasiveness of suffering endured by the physician. This flawed perception is morally problematic in the context of treating contested invisible disabilities (CIDs), which are often associated with medical ambiguity and uncertainty. In this paper, we argue for a relational reconceptualization of suffering in the context of CID to promote more effective care and improved physician-patient relationships. We propose, through the lens of an ethics of care, that a relational ontology of suffering makes salient certain aspects of patient-physician relationships that co-produce suffering, such as professional incompetence, empathetic distress, and epistemic and hermeneutic injustice, rendering the experience of having and treating a CID more visible. We then discuss the important implications of this understanding for this invisibly disabled identity and the therapeutic alliance between physician and patient and explore the potential of narrative-based medicine to better equip physicians with the knowledge, guidance, and skill to fulfil their ethical responsibility to care for and respond to not only the suffering of this population, but their own suffering as well.

摘要

痛苦是医疗保健中一个难以捉摸的方面,在临床诊疗中人们错误地认为它仅存在于患者身上——这种假设没有认识到医生所承受痛苦的普遍性。在治疗有争议的隐形残疾(CID)时,这种有缺陷的认知在道德上存在问题,因为CID常常与医学上的模糊性和不确定性相关联。在本文中,我们主张在CID的背景下对痛苦进行关系性的重新概念化,以促进更有效的护理并改善医患关系。我们通过关怀伦理学的视角提出,痛苦的关系性本体论凸显了医患关系中共同产生痛苦的某些方面,比如专业能力不足、共情困扰以及认知和诠释不公,从而使患有和治疗CID的经历更易被看到。然后,我们讨论这种理解对于这种隐形残疾身份以及医患治疗联盟的重要意义,并探讨叙事医学的潜力,以便更好地使医生具备知识、指导和技能,从而履行其道德责任,不仅要关心和应对这一群体的痛苦,也要关注他们自己的痛苦。

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