Naming Things

One thing we're good at in medicine is naming diseases. Diseases used to be named after the people who discovered them (like Parkinson's Disease, named after the guy who published the first case series of a disorder he called paralysis agitans). Now, there's a trend toward using more descriptive terms (though, sometimes I wish we'd stuck with an eponym for hemophagocytic lymphohistiocytosis, just saying) to make it easier to discuss diseases outside of their historical context. The name of a disease gives us an anchor. Some place to start, to build on.

We're less good at naming other parts of the disease experience. It's easy to admit a patient to the hospital for febrile neutropenia and follow guidelines to treat it, but it's sometimes it's a real challenge to sit with a patient and help them contend with the terrifying strangeness of this new thing they're going through. Someone with a new diagnosis of acute leukemia who went to the emergency room just because they were fatigued, and learns not only do they have a disease that is often curable but also potentially fatal, and that treatment will require a month-long stay in the hospital, that person has more to sift through than we doctors often let ourselves appreciate.

Some of the names for these things that I've heard from patients in the past few months are disoriented, lost, trapped, confused, overwhelmed. When this comes up in conversation, I've mostly found myself saying something like 'I hope it will get better', or 'I can't imagine how difficult this must be'.

We need better names for this part. Words like adjustment, anxiety, depression, denial; these are often too imprecise to be universally helpful. We have some people in the hospital who are better-trained to help address this: palliative care docs, social workers, psychologists, chaplains, they are all indispensable.

I think we could start by thinking about more specific names for these things. That will give us better ways to talk about them.