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Why Bioethics Should Pay Attention to Patients Who Suffer Medically Unexplained (Physical) Symptoms—A Discussion of Uncertainty, Suffering, and Risk

The article “Why Bioethics Should Be Concerned with Medically Unexplained Symptoms” (O’Leary 2018) argues that bioethics largely overlooks the realm of medically unexplained symptoms (MUS) and by focusing its energies on the management of diagnosed illnesses ignores up to 50% of physician–patient encounters. Further, the author, O’Leary, contends that when medicine and bioethics do pay attention to the issue of “vague” complaints, they only seek to limit potentially harmful physical medicine tests and biological treatments in patients whose symptoms are seemingly psychogenic in origin. While the author doesn’t mention nonmaleficence specifically, it is the bioethical principle that justifies this type of restrained approach when dealing with illnesses of unknown etiology. The article points to the preeminence of “evidenced based medicine” (EBM) as the source for this narrow clinical response. O’Leary worries that a confusion between mysterious organic diseases, enigmatic self-limiting illnesses, and functional psychogenic dysfunction creates an ongoing tension in clinical relationships. She challenges bioethics to address three fundamental areas of concern about MUS: (1) the nature of informed consent when dealing with diagnostic uncertainty and psychogenic illness; (2) a recognition that the psychogenic label is an obstacle to proper health care for patients; and (3) to actively contribute to the redefinition of psychosomatic disease in the new edition of the ICD11, the international diagnostic manual. O’Leary’s discussion is a welcome addition to the realm of medically unexplained symptoms. Importantly, O’Leary’s demand that bioethics focuses its attention on this problem is compelling. Her article unfortunately misses work that is being done in the area; consequently, I propose an expansion of the theoretical and practical paradigms that she presents. My expertise about medically unexplained symptoms (MUS) arises from personal experience, when I was diagnosed with “psychogenic illness” for 15 years until receiving a diagnosis of myasthenia gravis. The change in my diagnostic status meant that I went from being wheelchair-bound and unemployed to someone who walked independently, completed a doctorate, and became a tenured professor. I wrote an autoethnographic book about this ordeal (My Imaginary Illness: A Journey Into Uncertainty and Prejudice in Medical Diagnosis; Atkins 2010), which O’Leary cites. My knowledge further expanded when I co-directed a research project (Ethics Catalyst Grant, Canadian Institute for Health Research [CIHR]) that conducted a phenomenological study of patients and physicians dealing with MUPS: medically unexplained physical symptoms. The project encompassed two major Canadian cities and interviewed patients, general practitioners, and medical specialists. We too argue that both patients and physicians are ill-equipped to address the problem of diagnostic uncertainty. Nonetheless, we make some key conclusions: (1) MUPS does create tension and often insurmountable obstacles in the doctor-patient relationship; (2) MUPS patients move through various stages of anger, grief, and acceptance; and (3) good communication, ongoing medical follow-up, and effort in maintaining a therapeutic alliance between doctor and patient are essential to the good management of MUPS and reduced frustration for both the patient and practitioner (Atkins et al. 2013; Brownell et al. 2016; Kornelsen et al. 2016). One of the weaknesses in O’Leary’s article is that it does not cite any material that focuses on “MUPS” rather than just “MUS.” In our research, we discovered that because this is a new zone of investigation there are multivariate forms of naming diagnostic uncertainty in the clinic. Consequently, the bibliography is not as robust as it might be. In addition, the author outlines three different types of MUS or MUPS: organic illness of unknown etiology, self-limiting unknown illness, and psychogenic illness. Her article implies that medicine and bioethics can make a distinction between biological and psychogenic illness and that one of the challenges is to ensure that psychogenic patients retain access to biomedical, and not just psychiatric, care but that health resources are not wasted