Over the course of a month, you diagnose systemic sclerosis in two newly evaluated patients. Their responses to the news could not be more different.
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Explore This IssueJanuary 2016
Patient 1 is a previously healthy 55-year-old man who is an avid bicyclist and skier. He presents with a several-month history of rapidly progressive skin tightening extending to the proximal bilateral arms and legs, recent onset of shortness of breath and Raynaud’s phenomenon. You promptly confirm the diagnosis based on his clinical picture, as well as a positive ANA and antibodies to RNA polymerase-3.
Patient 2 is a 50-year-old college professor with a past history of anxiety, Raynaud’s phenomenon and skin thickening. Her ANA and anti-polymerase-3 antibody are also positive. Her primary care physician recently noted an elevation in her blood pressure on a single reading. When repeated in your office, her blood pressure is normal and unchanged from her baseline readings.
With each patient, you discuss the diagnosis of diffuse systemic sclerosis, its clinical features, the need for close monitoring, potential complications and therapeutic options at present. You also discuss the prognosis over the next few months and years.
What is striking is the vast variation in each patient’s response to the diagnosis: Patient 1 is calm and asks appropriate questions, which he asks rather matter of factly. “I hope I can ski better this season,” is his final remark. You wonder to yourself, “Did he grasp the gravity of the situation? Did he even hear me?”
Patient 2, meanwhile, was initially anxious and tearful and then crying inconsolably as she had suspected the diagnosis and read about it online. At the end of her appointment, she says, “I just wish I had cancer instead—at least people would support and grieve with me.” You wonder if this patient “knows too much for her own good.”
How do you direct the discussion about prognosis in each situation? For the first patient, do you stay the course and run with it, or do you prepare him for a more realistic future at the cost of depriving him of happiness today? For the second patient, do you offer her an empathetic ear and stay the course, or do you urge her to consider a best-case scenario as a possibility?
These are examples of competing priorities that put the rheumatologist in an ethical quandary: the obligation to do what is best for the patient—beneficence—vs. the obligation to respect patient autonomy.1-3