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 However, if the information obtained is of questionable accuracy, incomplete, misinterpreted or outdated, such requests and expectations can lead to challenging clinical encounters, especially when the patient’s preconceptions differ from the physician’s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.

What are positive & negative rights?

When patient requests conflict with a physician’s concept of acceptable practice, it’s important to examine the distinction between positive and negative rights.⁴ When considering medical encounters, most ethicists focus on patient autonomy in terms of negative rights—that is, the right to decline a treatment or test.

The American Medical Association Code of Ethics states the patient has the right to make decisions regarding the healthcare that is recommended by his or her physician. Accordingly, patients may accept or refuse any recommended medical treatment.⁵ The emphasis of informed consent promotes appropriate barriers to prevent patients from receiving care or interventions that are contrary to their desires or beliefs. Respect for patient autonomy, however, also governs positive rights—the right that something be done. Much less guidance is provided to physicians in this regard. If physicians are to respect patient autonomy by way of positive rights, how are physicians ever justified in denying a patient’s request?

According to the ACP Ethics Manual, the patient–physician relationship entails special obligations for the physician to serve the patient’s interest because of the specialized knowledge that physicians possess, the confidential nature of the relationship, and the imbalance of power between patient and physician.⁶

In this case scenario, the patient’s autonomous decision conflicts with the physician’s professional duty to look out for the patient’s best interests and welfare (i.e., beneficence). Therefore, we must carefully consider the balance between respecting the patient’s right to share in the medical decision making and the physician’s responsibility to avoid patient harm (i.e., non­maleficence). This patient is so worried about having an autoimmune disease that her quality of life is com­promised. When patients request diagnostic studies that are not indicated, physicians should first seek to understand the reason for the request. Then, the physician should educate the patient about his or her rationale for not recommending the test based on the physician’s specific knowledge and medical expertise for which the patient is seeking counsel.

When the risk of harm to the patient significantly exceeds the potential diagnostic utility of an intervention, the physician has to keep in focus one of the principal precepts of bioethics: primum non nocere (first, do no harm).

What if, despite education of medical necessity & risk-benefit ratio of intervention, the patient continues to insist on the nonindicated intervention?

If the principles of patient autonomy, beneficence and nonmaleficence were the only factors being weighed in such encounters, physicians may convince themselves that acquiescence to patient requests can be justified on grounds that reduction of anxiety alone may tip the risk-benefit scale toward intervention.

However, in the current case, it seems doubtful that another negative test would be the end of her requests. In addition, it is increasingly apparent in our current healthcare environment that medically unnecessary testing cannot be sustained, and the ethical tenet of distributive justice must also be considered. The principle of distributive justice implies that healthcare resources should be distributed fairly in society. Therefore, although an additional laboratory test, imaging study or procedure may seem insignificant, when magnified on a national scale, the economic cost of these “inconsequential” decisions becomes large. It is not unethical to withhold nonindicated treatment, and one of the reasons is the pursuit of distributive justice.

But what if I decline a test & miss something diagnosable?

Societal, legal and professional pressures add to physicians’ fear of missing a diagnosis. This is compounded in disorders when symptoms are purely subjective. When dealing with medical uncertainty associated with vague or subjective symptoms, physicians may agree to patient requests that do not present undue risk to the patient. However, the testing should be rational, medically justified and part of a comprehensive, well-documented management plan.

Back to the Patient

A critical goal of this patient’s physician is to reassure her that there is not an underlying disease being missed. The assumption in this encounter is that the patient feels information that can be obtained from a biopsy is more convincing than the physician’s clinical judgment regarding her diagnosis.

Additional investigation into the patient’s request reveals some important information: A friend was recently diagnosed with polymyositis, and she is concerned she may have this as well. After review of her current workup, education about fibromyalgia and its differences from autoimmune disorders, as well as the risk of the procedure compared with the expected benefit, the patient ultimately agrees a muscle biopsy is not required. Although she is still apprehensive about her diagnosis, she agrees to initiate a treatment plan with the reassurance that she will have ongoing monitoring for any changes in symptoms and reevaluation as necessary—plans that can only be implemented in the context of a strong physician–patient relationship.

Have you had an experience in which patients requested tests or treatment that you felt was not indicated? How did you handle the request? If you have comments or questions about this case, or if you have a case that you’d like to see in Ethics Forum, e-mail us at [email protected].

Matthew J. Koster, MD, is a second-year rheumatology fellow at Mayo Clinic, Rochester, Minn.

Kenneth J. Warrington, MD, is an associate professor of medicine and practice chair of rheumatology at Mayo Clinic, Rochester, Minn. He is a member of the ACR’s Committee on Ethics and Conflict of Interest.

Acknowledgment

The authors thank Dr. Robert H. Shmerling, MD, for his critical review of the manuscript.

References

1. Wolfe F, Clauw DJ, Fitzcharles M-A, et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res. 2010 May;62(5):600–610.
2. Bengtsson A. The muscle in fibromyalgia. Rheumatology. 2002 Jul;41(7):721–724.
3. Fitzcharles M-A, Ste-Marie PA, Goldenberg DL, et al. Canadian Pain Society and Canadian Rheumatology Association recommendations for rational care of persons with fibromyalgia. A summary report. J Rheum. 2013 Aug;40(8):1388–1393.
4. Beauchamp TL, Childress JF. Principles in Bioethics. New York: Oxford University Press. 1979:50.
5. AMA Council on Ethical and Judicial Affairs. Code of Medical Ethics of the American Medical Association, 2012–2013.
6. Snyder L. American College of Physicians Ethics, Professionalism, and Human Rights Committee. American College of Physicians Ethics Manual, 6th Ed. Ann Intern Med. 2012 Jan 3;156(1 Pt 2):73–104.