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慢性疲劳综合征与以疾病为中心的护理方法:争议、道德与悖论

Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox.

作者信息

Sharpe Michael, Greco Monica

机构信息

Psychiatry, University of Oxford, Oxford, UK

Sociology, Goldsmiths College, London, UK.

出版信息

Med Humanit. 2019 Jun;45(2):183-187. doi: 10.1136/medhum-2018-011598. Epub 2019 Jun 18.

Abstract

Contemporary medicine distinguishes between illness and disease. Illness refers to a person's subjective experience of symptoms; disease refers to objective bodily pathology. For many illnesses, medicine has made great progress in finding and treating associated disease. However, not all illnesses are successfully relieved by treating the disease. In some such cases, the patient's suffering can only be reduced by treatment that is focused on the illness itself. Chronic disabling fatigue is a common symptom of illness, for which disease-focused treatment is often not effective, but for which illness-focused treatments (psychological or behavioural) often are. In this article, we explore a controversy surrounding illness-focused treatments for fatigue. We do this by contrasting their acceptance by people whose fatigue is associated with a disease (using the example of cancer-related fatigue) with their controversial rejection by some people whose fatigue is not associated with an established disease (chronic fatigue syndrome or CFS, sometimes called ME (myalgic encephalomyelitis)). In order to understand this difference in acceptability we consider the differing moral connotations of illness and disease and then go on to examine the limitations of the concepts of illness and disease themselves. We conclude that a general acceptance of illness-focused treatments by all who might benefit from them will require a major long-term change in thinking about illness, but that improvements to the care of individual patients can be made today.

摘要

当代医学区分疾病(disease)和病患(illness)。病患指的是一个人对症状的主观体验;疾病指的是客观的身体病理学状况。对于许多病患来说,医学在发现和治疗相关疾病方面取得了巨大进展。然而,并非所有病患都能通过治疗疾病而成功缓解。在一些此类情况下,只有专注于病患本身的治疗才能减轻患者的痛苦。慢性致残性疲劳是一种常见的病患症状,针对疾病的治疗往往对此无效,但针对病患的治疗(心理或行为方面)通常有效。在本文中,我们探讨围绕针对疲劳的病患导向治疗的一场争议。我们通过对比与疾病相关的疲劳患者(以癌症相关疲劳为例)对这些治疗的接受程度,和一些与确诊疾病无关的疲劳患者(慢性疲劳综合征或CFS,有时称为肌痛性脑脊髓炎或ME)对这些治疗的争议性拒绝来进行探讨。为了理解这种可接受性的差异,我们考虑疾病和病患不同的道德内涵,然后继续审视疾病和病患概念本身的局限性。我们得出结论,所有可能从针对病患的治疗中受益的人普遍接受这种治疗,将需要在对病患的认知上进行重大的长期转变,但当下就能对个体患者的护理做出改进。

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