Ethics Forum: Patient Test Requests Pose Challenges for Rheumatologists

Case

A 28-year-old woman presents for evaluation of exhaustion, widespread myalgias and muscle spasms. In addition, she has numerous symptoms spanning multiple organ systems, including paresthesia, atypical chest pain and abdominal bloating. She has previously undergone evaluation at other medical centers and by multiple subspecialists, and no specific pathology or diagnosis has been established. She has difficulty continuing her employment due to disabling symptoms. A compre­hensive evaluation for malignancy and infectious diseases has been unrevealing. Neurological evaluation, including detailed physical examinations, imaging of the brain, electromyography and testing for large- and small-fiber neuropathy, has been negative. Extensive laboratory studies, autoimmune serologies and radiographic imaging studies are unremarkable.

You review the history and conduct a comprehensive physical examination and find no abnormalities, except for widespread muscle tenderness without weakness. The patient is not reassured by the negative evaluation and is concerned that a progressive auto­immune disorder is being missed. Additional evaluation is pursued, including magnetic resonance imaging (MRI) of proximal muscles, which is negative. The patient requests further testing, including a muscle biopsy. Her request conflicts with your recommendation that the diagnostic evaluation has been completed and your plan to pursue symptomatic management for fibromyalgia.

Dilemma

As access to medical information expands, patients increasingly present to clinical encounters with specific preconceptions regarding their possible diagnosis and requests for testing and interventions. Medical literacy, if applied appropriately, can lead to patient education and empowerment, and can improve shared decision making. However, if the information obtained is of questionable accuracy, incomplete, misinterpreted or outdated, such requests and expectations can lead to challenging clinical encounters, especially when the patient’s preconceptions differ from the physician’s assessment.

How should physicians approach patient requests for testing deemed unnecessary or even contraindicated in a manner that respects patient preferences, upholds a physician’s integrity and maintains a strong physician–patient relationship?

Discussion

On the surface, the patient’s request in the above scenario may seem morally innocuous; however, it has complex ethical undertones involving patient autonomy, physician professionalism, knowledge asymmetry, medical uncertainty and defensive medicine.

Should additional testing be performed in this patient?

The patient in this clinical scenario has fibromyalgia. Comprehensive examination and testing have already been performed to rule out other conditions for the cause of pain, one of the criteria for the diagnosis of this condition.¹ Muscle biopsy studies show there are no specific changes conclusive for fibromyalgia.² Additional testing in the evaluation of such patients should be prompted primarily by clinical sus­picion and objective physical findings. Excessive and repeated testing may have a negative effect on the patient’s well-being and encourage medicalization.³ In the absence of findings concerning for inflammatory myopathy, muscular dystrophy or metabolic muscle disease, muscle biopsy would not be indicated and, thus, can be considered medically unnecessary in this case.