Smyth Nancy J, Blitshteyn Svetlana
School of Social Work, University at Buffalo, Buffalo, NY 14421, USA.
Department of Neurology, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY 14203, USA.
Int J Environ Res Public Health. 2025 Feb 13;22(2):275. doi: 10.3390/ijerph22020275.
People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases-termed the "never-words"-can leave patients in significant emotional distress and negatively impact the clinician-patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.
患有长期新冠后遗症、肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)和其他复杂慢性疾病的患者一直表示,他们难以获得有效且富有同情心的医疗护理,并且遭到医疗保健专业人员的怀疑、评判、误导,甚至被忽视。我们认为,当医疗保健专业人员在面对复杂的慢性疾病时,如果没有接受适当的培训、缺乏诊断生物标志物或FDA批准的疗法,就更有可能出现这些对抗性的互动和言语。从业者与患者之间这些有问题的对话通常涉及特定的词汇和短语——即所谓的“禁忌语”——这会让患者陷入极大的情绪困扰,并对医患关系和康复产生负面影响。为了防止这些破坏性的互动,我们回顾了关于艰难临床对话最佳实践的关键文献,并讨论了这些实践对患有长期新冠后遗症、ME/CFS、自主神经功能障碍和其他复杂慢性疾病的患者的应用。我们为“禁忌语”提供了替代的、更合适的措辞建议,这些措辞可以通过富有同情心、鼓励性和非评判性的语言来加强治疗关系并改善慢性病患者的护理。