Thursday, March 25, 2010

Expectations, revisited.

My second patient started bawling today, clutching at my hands and pulling me close. She's being discharged today, truly no better than when she walked in the door 1.5 weeks ago. She was bawling, she explained, because she's going to miss me.

My eyes welled up. I wished her well, thanked her for the privilege it has been getting to know her and help take care of her, thanked her for everything she has taught me. She cupped my chin and told me that I'm going to be a great doctor, and that she'll keep me in her prayers. I tilted my head up to drain the tears, to no avail. I needed to leave. I wished her well again, and left. I felt useful and proud and all the other things you'd think one would feel after a moment like that. But I also felt so profoundly sad. My patient isn't well, she's not going to be well. I spent 5 hours tracking down all her specialists for follow-up and jumping through hoops to get her portable oxygen to take home with her -- and after all of it, she's still not well. And I'm not well because of it. She has no concept of how unwell she is -- because neither her real doctors nor I did anything to frame it for her. Her expectations are entirely dependent on the words that leave our mouths.

Yesterday, we got biopsy results back from my first patient. He was discharged Monday with the label of a disease, a 10% understanding of that disease, and an absence of discussion about its prognosis. Not because this gap wasn't identified; it was truly because nobody really knew. But then the biopsy results came back, and it was not what we told him that he had. Instead, he actually has one of the first things I wrote on my initial assessment note the day I met him (based on a silly "flag fact" that I internalized during my Step 1 exam prep - if a question steam says that someone gets kidney disease 10 days after an upper respiratory infection, it is always implicit that they have IgA nephropathy -- and therefore, any question asked thereafter needs to operate with the presumption that the patient actually has IgA nephropathy). Nobody talked about IgA nephropathy, because of a really unique lab finding that he had - pointing to a specific category of diagnoses (an ANCA-associated vasculitis). Nobody read my note. When I asked a question about a particular lab test that would point to IgA nephropathy, I wasn't confident or articulate enough to explain what I was thinking. I let it go. Clearly, I reasoned, my thoughts were unfounded. I didn't step up.

Now we know that he has IgA nephropathy and the other diagnosis. There is no treatment for IgA nephropathy. He needed treatment for the other diagnosis, which he continues to receive. The treatment would not have changed. What does change is what happens next. This combination of IgA nephropathy and ANCA vasculitis is often fatal. When this guy left my care, he had no expectation that this was even on the table. Nobody talked about prognosis for ANCA vasculitis; it's so variable. But for optimistic people, the absence of specific cautions implies a reasonably positive expectation. So when this guy eventually hears from his primary nephrologist that he has this other disease process that he's never heard one word about after 2 weeks in the hospital, what will he think? He'll feel crushed. Alone. Mistrustful of the competence of those taking care of him. Not because anything is different, except his expectations. We didn't help shape his expectations - and those developed of his own devices are so drastically different from the reality he is about to learn.

And when I really started to appreciate this last night, I was the one bawling. My expectations were violated, too.

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