Ethical Management of Diagnostic Uncertainty: Response to Open Peer Commentaries on “Why Bioethics Should Be Concerned With Medically Unexplained Symptoms”

O’Leary, Diane

doi:10.1080/15265161.2018.1481241

Cited by 6 publications

(5 citation statements)

References 14 publications

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“…Bioethicist Diane O'Leary's essay about the limitations of medicine's diagnostic model also conflates diagnostic uncertainty with the medically unexplained (O'Leary, 2018). The conflation is present not only in her paper's title, "Ethical Management of Diagnostic Uncertainty: Response to Open Peer Commentaries on 'Why Bioethics Should Be Concerned with Medically Unexplained Symptoms'," but also in its content.…”

Section: Sloppy and Idle: Diagnostic Uncertainty In The Twenty-first Centurymentioning

confidence: 99%

Uncertainty and the inconvenient facts of diagnosis

Jutel

2021

Endeavour

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One common contemporary usage of the term "diagnostic uncertainty" is to refer to cases for which a diagnosis is not, or cannot, be applied to the presenting case. This is a paradoxical usage, as the absence of diagnosis is often as close to a certainty as can be a human judgement. What makes this sociologically interesting is that it represents an "epistemic defence," or a means of accounting for a failure of medicine's explanatory system. This system is based on diagnosis, or the classification of individual complaints into recognizable diagnostic categories. Diagnosis is pivotal to medicine's epistemic setting, for it purports to explain illness via diagnosis, and yet is not always able to do so. This essay reviews this paradoxical use, and juxtaposes it to historical explanations for non-diagnosable illnesses. It demonstrates how representing non-diagnosis as uncertainty protects the epistemic setting by positioning the failure to locate a diagnosis in the individual, rather than in the medical paradigm.

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Section: Sloppy and Idle: Diagnostic Uncertainty In The Twenty-first Centurymentioning

confidence: 99%

Uncertainty and the inconvenient facts of diagnosis

Jutel

2021

Endeavour

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“…Some of these symptoms (such as pain or fatigue) and syndromes (such as irritable bowel syndrome or fibromyalgia) remain without an obvious somatic cause, even after extensive diagnosis and testing. Thus, they are often referred to as “medically unexplained symptoms” (MUS) [70, 71]. Another example within in this field of tension includes cases where a physical disease has already been cured from a medical perspective but the person affected still feels ill [72].…”

Section: Main Textmentioning

confidence: 99%

“…Physicians also might become unsure how to react to patients’ suffering when no accurate (physical) diagnosis can be made. As a result, these patients are sometimes interpreted as having a psychosomatic character, which leads to a range of communicative and ethical challenges [71, 74].…”

Section: Main Textmentioning

confidence: 99%

“…Patients suffering from illness without medically detected disease do not only challenge the contemporary paradigm and culture of medicine, which prioritises medical and scientific explanations, but also strain healthcare resources [76] – for example, when patients insist on MRI and other costly diagnostic procedures – so that matters of justice in health care are affected when the perception of illness deviates from the medical perspective on diagnostics and treatment [71].…”

Section: Main Textmentioning

confidence: 99%

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Illness and disease: an empirical-ethical viewpoint

Seidlein

Salloch

2019

BMC Med Ethics

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BackgroundThe concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates.Main textThree potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research.ConclusionThe combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected.

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“…Biomedicine’s inherent mind-body dichotomy and assumptions of linear causality may lead to the simplified inference that symptoms without an objectively verified “organic” explanation must be “psychogenic” (Arnaudo, 2017 ; Kirkengen et al, 2016 ; Kirmayer & Gómez-Carrillo, 2019 ; O’Leary, 2018 ). If the person localizes the symptom in the body and does not experience any primary mental suffering, this conclusion will likely elicit doubt, uncertainty and feelings of being dismissed, discredited and stigmatized (Lian & Robson, 2017 ; Nettleton et al, 2005 ; Salmon, 2007 ).…”

Section: Introductionmentioning

confidence: 99%

Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome

Bakken

Mengshoel

Synnes

et al. 2023

International Journal of Qualitative Studies on Health and Well

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Background The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. Purpose This study’s purpose is to provide insight into people’s experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. Methods Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants’ experiences and understandings. We present the result through one participant’s story. Results The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. Discussion We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

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Ethical Management of Diagnostic Uncertainty: Response to Open Peer Commentaries on “Why Bioethics Should Be Concerned With Medically Unexplained Symptoms”

Cited by 6 publications

References 14 publications

Uncertainty and the inconvenient facts of diagnosis

Uncertainty and the inconvenient facts of diagnosis

Illness and disease: an empirical-ethical viewpoint

Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome

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