After the ICU: What Does It Mean to Be 'Okay'?

Patients who require intensive hospital care often go home with serious mental and emotional scars that go unaddressed. The ICU can be a microcosm of a healthcare system's inability to see bigger pictures for life after illness.

On one of the most extraordinary nights of my first year as a doctor, I admitted a young woman to the intensive care unit who was coughing up blood and barely able to breathe. Just days before, she’d traveled to a hotel somewhere outside of New York City, where she’d received cosmetic injections of liquid silicone into her buttocks. She was 28 years old. Now, the silicone had traveled through her body, showering her lungs.

I’d never been so close to acuity, and there in those moments—as the bleeding in her lungs threatened to suffocate her, as her heart stopped and we started it again—I found myself terrified, but excited, too.

She didn't die that day, nor in the days and weeks that followed. Slowly, her lungs healed. We decreased the doses of the medications that kept her paralyzed and sedated; she started to wake up, nod, and squeeze our hands when we asked. It was awesome. She was going to be okay, I told her parents and husband. We’d saved her.

I've carried that victorious narrative with me for years. I told it again while interviewing for training to become a critical care specialist. But now, working as a physician in the medical intensive care unit myself, I've started to wonder if this is not only a story about the best of medicine today, but the worst of it, too.

As more adults survive intensive care, we've inadvertently created a new world populated by the walking wounded. Some return to work, bodies healed, but find their minds are different, slower than before. Others are depressed, anxious, tortured by flashbacks to horrific events that never occurred. As a critical care doctor, it’s entirely possible for me never to see any of these outcomes. But I've come to fear that our best interventions are less meaningful, and our counsel to families shallow, if we don’t fully understand what happens to our patients after they leave our units’ doors.

Nancy Andrews is a Maine art professor who had spent weeks in the intensive care unit at a Boston hospital back in 2006, when a tear in the wall of her aorta nearly killed her. After she left the ICU, she told me, she found that she’d start to cry at random moments. The sound of helicopters scared her. No one had prepared her for this.

“If I had one word to sum up my ICU experience,” Andrews writes on a website she’s put together as a resource for other survivors of critical illness, “It would be ‘horror.’ In addition to my paranoid delusions of people trying to kill me were hallucinations of ants on peoples’ faces; weird things in my IV fluid bags; nightmare-like hallucinations where I was variously stuck in the bottom of a boat … stuck in a well … being tethered by rubber tubes attached to my genitals to the ground … ”

Finally, her primary doctor recognized that she seemed to have post-traumatic stress disorder. She slowly recovered, but what about those who weren't lucky enough to be properly diagnosed?

About one in three ICU survivors who are sick enough to require intubation might develop post-traumatic stress disorder. Recent studies have also described that those who leave the ICU also suffer high rates of impaired brain functioning, on the level of mild or moderate dementia. The individuals might have a hard time concentrating, planning, or remembering simple tasks. They might have trouble returning to work or paying bills. Other studies have shown that, of patients who are admitted to the ICU, more than a quarter have significant depressive symptoms, which negatively impact their quality of life.

None of this is regularly part of what doctors tell patients or families. Who would care about a little weakness or anxiety or difficulty balancing a checkbook, our silence seems to suggest. Isn't being alive—walking, breathing—good enough?

We need to care about both. I’m not suggesting that our interventions are inherently flawed, only that they have long-lasting repercussions that we can’t afford to ignore. There are things we can do. Some studies have shown that patients keeping diaries of daily events within the intensive care unit can decrease rates of PTSD after the ICU. Another study recently found that music might help to decrease anxiety in the critically ill so that they require fewer sedative drugs.

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.