“It's just a virus”

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After a weeklong vacation from my inpatient general surgery service, I log into the electronic medical record and review the events of the preceding days. Although I know about half the patients already, I see a few I have not previously taken care of. I double-click the chart of the first patient, a Puerto Rican woman in her mid-50s who was admitted for an obstructing mass in her terminal ileum with a spot in her liver that is ominously suggestive of metastatic disease. The plan for the day is for the patient to go to the OR for right hemicolectomy with end ileostomy. If only it were that simple.
As my team enters the patient's room, we encounter a pleasant woman with a nasogastric tube in place. She greets us with a reasonably cheerful “good morning.” After asking the obligatory questions about her bowel function, we tell the patient the plan for the day, to which she adamantly responds in her thick accent, “No, no surgery.” My chief resident reminds the patient that she has a tumor that is making her sick and that we need to remove it so she can eat again. The response this time from the patient, “No, there is no tumor. I have a virus.”
The events of the next 14 days are things that I have not yet experienced in my 7 short years of clinical practice. Frankly, they are events that none of the providers involved in this case have ever encountered. Over the course of the next couple of days, our patient continues to insist that she only has a virus and that she is leaving the hospital after her virus is treated. We continue to redirect her, but her refusal to believe our modern medical findings persists. Psychiatry evaluates her and deems her incompetent on the basis of denial, noting we should speak to her son about obtaining consent for any and all care. By midweek, the pathology report from her liver biopsy arrives and notes metastatic adenocarcinoma, as expected. Along with her nurses, son, and attending surgeon we break the news to the patient, and once more she responds, “No, this is just a virus.” We spend hours speaking with our patient's sons, showing them laboratory results and CT images that, to them, resemble Rorschach inkblots on the computer screen. After countless hours, her son agrees that his mother needs surgery and verbally consents but refuses to sign the form. After much contemplation and hours of consultation, the legal department advises a court hearing to determine conservatorship. This is ultimately granted to her eldest son, who signs the appropriate documents allowing us to proceed with surgery.
The many events and complex social situation surrounding this case followed me for weeks. I went home thinking about it and woke up quite the same. I posed many questions to my colleagues, and nobody seemed to have any good answers. Does extreme denial truly make a patient incompetent? Did she understand that she had cancer? Or did she actually believe her symptoms of obstruction were caused by a virus? Would we have let our patient leave against medical advice if she had verbalized understanding of her metastatic cancer but still refused treatment? Because our patient was an immigrant with a fourth-grade education, were there cultural and educational components at play? And what about her children? I found her son's verbal consent but unwillingness to sign the paper rather interesting. Signatures are binding.
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