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A 54-year-old woman is establishing care in your clinic after retirement of her previous rheumatologist. Your review of her records suggests that she was diagnosed with systemic lupus erythematosus seven years ago on the basis of symptoms of body pain and fatigue, and serologic evidence of positive ANA 1:40 (speckled) and borderline anti-SSB antibody. She is currently on hydroxychloroquine 200 mg BID and prednisone 5 mg daily. She has hypertension, well controlled with amlodipine 5 mg daily, but has otherwise been healthy. Her body pain and fatigue resolved after she quit her stressful job.
During the clinic encounter, you notice that she is wearing a Lupus Foundation of America T-shirt and learn that she is a leader of a lupus support group in her community. You were planning on discussing the possibility of her not having lupus but now are hesitant to bring up the conversation.
These studies highlight the fact that making an accurate diagnosis is difficult even with rheumatologic conditions common to our profession and even in the hands of an experienced rheumatologist. In light of the aforementioned evidence, we, as clinicians, will be confronted by discussions with our patients about possible misdiagnoses and the potential for discontinuing associated pharmacologic treatment that they may have been receiving for years.
The imperative for accurate diagnosis and treatment is elaborated by the ACR Code of Ethics, which states: “Members shall be dedicated to providing competent medical care with compassion and respect for human dignity and rights, and shall regard responsibility to the patient as paramount.”3
Our duty is to meticulously evaluate the available data before accepting or rejecting an already established diagnosis.
The ACR Code of Ethics also states, “Members shall not dispense or supply drugs, remedies, or appliances unless it is in the best interest of their patients.”3 Therefore, if our best judgment dictates an ongoing treatment plan is not beneficial for the patient, then our moral duty is to make appropriate changes promptly, whether or not that medication is benign.
Seemingly at odds with this imperative is the desire to maintain our patient’s trust. That trust may be bolstered, however, if we begin our conversation with patients by trying to understand the psychological and physical journey the patient took following the diagnosis of a chronic medical condition. Elisabeth KÜbler-Ross identified five stages of grief: denial, anger, bargaining, depression and acceptance; patients with chronic medical illnesses often experience similar reactions after learning about their diagnoses.4 Psychological reactions to receiving a diagnosis are unique to each patient and evolve over time. Because patients develop coping mechanisms for their diagnoses, we must also understand how they coped with a diagnosis if we are to help a patient effectively. It is not only their diagnosis that is changing. Their lives may change tremendously.
If our best judgment dictates the ongoing treatment plan is not beneficial for the patient, then it is our moral duty to make appropriate changes promptly.
Additional nuances can complicate the situation. This conversation may take place during an initial visit, when the physician-patient relationship is not well established and the physician has not yet earned the patient’s trust. In addition, the physician may not have full access to the patient’s past records and could be missing a crucial piece of information that led to a prior diagnosis. Establishing a deeper relationship with patients and ensuring the full picture of their care is obtained is essential prior to making such a crucial decision. Taking the extra step of communicating with the previous medical provider, which should be integral in the transition of care, can help elucidate any confusion regarding past history or why the diagnosis was made in the first place.
The predicament of having to change a diagnosis altogether could perhaps be avoided if a well-informed diagnosis is made in the initial patient encounters. Following the guidelines employed by physicians discussing a cancer diagnosis—using simpler language, allowing adequate time for discussion in an appropriate clinical setting, understanding the patient’s mental state at the time and using such words as “suspicion” or “possibility” of a disease until a definitive diagnosis is made—could prevent a premature or incorrect diagnosis.5
Cognitive biases of physicians can also prevent an accurate initial diagnosis or changing a diagnosis to the correct one. A first impression of a patient having psychological symptoms and ignoring further aspects of the exam could lead to confirmation bias. Failure to reevaluate for lupus a patient who was seen for fibromyalgia by a previous provider could lead to anchoring bias. These examples are just a few pitfalls that could lead physicians into misdiagnosing their patients.6
The Art of Medicine
How do we go about changing a patient’s diagnosis once we are confident that the wrong diagnosis was made without negatively influencing the physician-patient relationship? This dilemma is where the “art of medicine” comes into play. In the referenced case, the patient has adapted her life significantly to her lupus diagnosis. Therefore, establishing trust and developing a good rapport with her may take multiple visits. Allocating enough time for a discussion, evaluating current medications and reassuring the patient that you will continue to follow her in your clinic are key factors in the process.
Joseph L. Green, DO, is a second-year rheumatology fellow at the University of Tennessee Health Science Center. He is a member of the ACR Committee on Ethics and Conflicts of Interest.
Acknowledgment: I would like to thank Dr. Syed Raza for his input regarding the article.
References
- Daly R, Partovi R, Davidson P. Lupus diagnosis: Process and patient experience [abstract]. Arthritis Rheumatol. 2017;69(suppl 10).
- Barhamain AS, Magliah RF, Shaheen MH, et al. The journey of rheumatoid arthritis patients: A review of reported lag times from the onset of symptoms. Open Access Rheumatol. 2017 Jul;9:139–150.
- Code of Ethics of the American College of Rheumatology Inc. American College of Rheumatology. 2017 Aug.
- Kübler-Ross E, Kessler D. On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss. New York City: Scribner, 2014.
- Okamura H, Uchitomi Y, Sasako M, et al. Guidelines for telling the truth to cancer patients. Jpn J Clin Oncol. 1998 Jan 1;28(1):1–4.
- Cognitive biases in health care. Quick Safety. 2016 Oct;28:1-3.
