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. It seems that despite recognizing that surgical intervention was the only way to make his mother comfortable, he was unwilling to assume any risk.
I have consulted with many people about this case and have scoured the Internet. I found no good answer for a situation like this. As providers, our intent for patients undergoing palliative operations, especially, is to prevent pain and suffering. To first do no harm. Although I would like to think we did both for this particular patient (and perhaps this was the end result), getting to this point caused her significant anxiety and fear, which are forms of pain and suffering. Not only did our patient suffer with fear and anxiety, but her family did as well, despite our best intentions. Did we adequately carry out our oath to do no harm?
As a part of doing no harm, we have an obligation to educate patients and families so that they can then make an educated decision. A competent patient has the right to refuse treatment, whether palliative or curative. What, though, distinguishes competent from incompetent in an otherwise healthy adult? By most conventional definitions, incompetence is indicated by the inability to understand the disease process and/or proposed procedure. In this case, our patient did not demonstrate any indication of understanding, so an emergency conservator was appointed. Once this happened, did we project our own biases on to our patient's son? Was his decision to sign the consent form based on what we felt to be what was best for his mother? Or was it based on what he felt was best for her and what she would have wanted? I doubt I will ever know the answer.
Ultimately the patient, still unwilling, had her surgery. After the operation, her trust in her surgical team gradually improved. Each morning on rounds, her demeanor seemed a bit more cheerful. Her body language of distrust eventually changed to that of gratitude. She thanked us for speaking to her in Spanish, and we even got to the point where we joked about how salty the broth is at the hospital. I am not sure what sparked this change. Perhaps she acquiesced to the fact that we truly had her best interest in mind, or maybe it was a case of Stockholm syndrome.
Although the patient's life expectancy is short, I take comfort in knowing she will be able to eat what she wishes as she lives her remaining months. Weeks after these events, I still wonder if we did the right thing. I know medically we did, but did we socially disrespect her wishes? And did we force her son into agreeing with us? This was, by far, the most complex medicolegal situation I have been a part of during my time as a PA. Although many questions are left unanswered, this scenario has taught me several valuable lessons and has influenced me more than I thought was possible. At the end of the day, we must remember that denial is a powerful thing and that medicine is not nearly as black and white as we would like it to be.