We will change our practices on, say, ventilators, after new data is released, yet ICU diaries exist in only a handful of hospitals in the U.S. Even fewer institutions have started clinics for patients who’ve survived the ICU. We care, but critical care doctors—and by extension, their patients—are uniquely poised to fall prey to an illness invading all of medicine. Each patient’s “big picture” is housed in increasingly complex electronic medical records, but in no one person’s mind.
Indeed, my patient’s story is not just about quick-moving intensivists. It is also a story about a medical system that encourages sub-specialties to exist in silos and that values easily measurable short-term outcomes over messy, nuanced complexities.
A patient enters the ICU to be cared for by well-meaning physicians whose successes are defined by time-on-the-ventilator and thirty-day mortality. From there, it’s on to the regular medical floor, where she is handed over to a rotating fleet of internists. It is eventually their job to discharge her. She might spend a few weeks in a rehabilitation unit where a new physician visits her once or twice. When she finally goes home, she’s given a discharge appointment with an entirely new doc at a clinic affiliated with the hospital. This is, in general, as close as we come to continuity.
It’s no wonder that critical care survivors are a largely invisible population. They have ten specialists, perhaps, but not one doctor. And so, with approximately 4 million ICU admissions in the United States each year, this becomes everyone’s problem. We all must know this landscape, for we all—from the critical care specialist, to the primary care doctor who must meet these patients in the clinic for the first time after the ICU, to the families who live with them—must navigate its unexpected geography.
In the medical intensive care unit a few weeks ago, a young man took me aside to ask what I thought about how his mother was doing.
“Will she get through this?” he asked me. “Will she be okay?”
A few years ago, it would have been so much easier to answer. Our antibiotics had done the job. She was close to coming off the breathing machine. But now, I find, I’m not so certain how to respond. I think his mother will live, yes, but will she ever be herself again? Would she be able to do the Sunday crossword? Will she be able to go grocery shopping? What, really, does it mean to be “Okay?” I feel that I owe him a fuller answer than I am able to give.
So when I revisit the story of the young woman with the silicone injections, it looks different to me. The details are the same—the blood coming out of the breathing tube, the way her hands were cold, our relief when we knew she would live—but the arc is different. It is not a victory narrative now, but one person’s unfinished story. I wonder if she went back to work. I wonder if she jokes with her husband, reads to her children. I wonder if she has nightmares. I can only hope her doctors now know enough to ask.