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05/02/2018

What’s in a Name? The Ethical Importance of Respecting a Patient’s “Unexplained” Medical Concerns

This post is also published as an editorial in the May 2018 issue of the American Journal of Bioethics.

by Kayhan Parsi, PhD JD & Nanette Elster, PhD

In the first-year clinical skills course medical students take here at the Loyola University Chicago Stritch School of Medicine, one of the key aspects of the medical interview that students learn is the patient’s perspective of their illness. In addition to documenting the patient’s main concerns, history of present illness and past medical history (a curious redundancy), we stress with our students that they should always ask what the patient thinks is going on. Documenting the patient’s perspective is important because it emphasizes the patient’s own interpretation of what is happening to him or her. This conveys not only respect and concern, but it may reveal something important that the clinician may otherwise miss. Thus, the patient perspective emerges as a key part of the interview. Yet, as Diane O’Leary (2018) states in this month’s target article, the majority of clinical complaints are due to “medically unexplained symptoms” or MUS. Such symptoms lack a biological explanation. Her article focuses on a subset of MUSs that have primarily psychosocial origins.

Art by Katelyn Greenhill

Although the term MUS is generally useful, it has some challenges. For instance, the term “unexplained” implicitly carries stigma and even bias. Synonyms for “unexplained” include: “inexplicable,” “strange,” “odd,” “puzzling,” “enigmatic,” “unfathomable,” and “vague.” Such terms will not engender much confidence in patients regarding the diagnostic process. Even the use of the term “psychogenic” might cause a patient to feel that they are not believed or that their provider is suspicious of her accounting of symptoms. Terms such as “unexplained” and “psychogenic” may undermine the trust that is essential in a functional physician/patient relationship and exacerbates the already pervasive power differential between physician and patient, particularly if the patient is female and the physician is male. O’Leary posits that bioethics must step in to provide guidance on how to address such uncertainty while still respecting autonomy and balancing the risks and benefits of a search for diagnosis.

Diagnosis is not just essential to providing needed and much sought-after relief for the patient but has other implications as well, including patient identity and access to support and services. O’Leary points out that although “lack of attention to error in psychogenic diagnosis is endemic within the medical community, there is growing evidence that this attitude creates a significant access to care problem for patients with diagnostically challenging biological conditions”. Not only do insurance benefits become unavailable but access to benefits of Social Security, protection under the Americans with Disabilities Act, disability insurance, time off from work, etc., may also be inaccessible without a formal diagnosis.

The biomedical model’s rigid adherence to an evidence base makes amorphous symptoms such as pain, fatigue, and “brain fog” much harder to address. The biomedical model presumes health unless definitive testing proves otherwise. While this model can avoid needless testing and potentially harmful and unnecessary intervention, it can also lead to “victim blaming.” It also makes the medical encounter more adversarial than collaborative in nature. If shared decision making is truly the goal we ought to seek in modern medicine, then O’Leary is correct—we need a new approach for addressing medical uncertainty. Such an approach would offer more than a clinical term for “it’s all in your head,” one that respects that what the patient is feeling is real for them, even though it may not fit neatly within our current diagnostic criteria. Atkins rightly asserts that

This inability to point to an unambiguous diagnosis needs to be a more transparent part of health care practice and of health care relationships. In doing so, we encourage more realistic expectations about patients and physicians and deter the blaming and frustration that can occur when diagnostic uncertainty emerges.

Two more serious challenges emerge. One is the dualistic nature of labeling certain concerns as primarily having a biological cause and others having a primarily psychosocial cause. As O’Leary states, “the biopsychosocial model seems to suggest that it’s somehow a philosophical faux pas to be clear about whether a patient does or does not require specifically biological care”. In fact, the biomedicalpyschosocial-spiritual model of care would challenge this even further. The dualism of the old biomedical model of care is increasingly viewed as being outdated and reductionistic–residual from the days of paternalistic medicine. For instance, the work of Nadine Burke-Harris focuses on children who exhibit a variety of medical maladies. Basing her work on a mounting amount of evidence, it appears that many childhood diseases are rooted in what she terms “adverse childhood experiences.”. These severe and prolonged adverse experiences have a profound impact on children’s health (and their later well-being). In the absence of such an explanatory model, would such symptoms be simply medically unexplained? The health effects are real, even though the symptoms seen are deeply rooted in a person’s psychosocial history and not simply of biological origin. Canaverra, et al., state that “anxiety disorders, depression, past trauma, and other psychological factors…are common in individuals with MUS, and are typically undetected and untreated in children”.

Lastly, the issue of gender is inescapable here. As O’Leary states, “Lack of ethical attention to medically unexplained symptoms is troubling on many counts, but no area of that oversight is more clearly problematic than where psychogenic diagnosis is entangled with an assumed lack of autonomy in women”. Michele Lent Hirsh chronicles this gendered response to the concerns of young women in her book Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine. Hirsh interviews young women who, notwithstanding their youth, are suffering from a variety of “invisible” disorders such as autoimmune disorders that are either not taken seriously or outright dismissed. In her commentary, Swartz goes even further, providing an intersectional analysis that implicates issues of gender, class, race, ability, orientation, and so on. Such an approach can hopefully help clinicians engage with their patients in a richer and more meaningful manner, where their individual concerns are acknowledged and respected as true concerns, and not just “in one’s head.”

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