Barry Jones spent nearly a month in the ICU with COVID-19—including 15 days on a ventilator—but for part of that time, he thought he was somewhere else entirely.
“One day I was in D.C., the next I was in Chicago, riding motorcycles with friends of mine I hadn’t seen in years,” he told me last week, from his home in Boynton Beach, Florida. “I was putting my shoes on, walking out of the hospital to have barbecue and a beer,” Jones recalled. “I was all over the place. I was on a boat. I was going back to work. I was vividly, in my mind, doing things.”
Over FaceTime, Barry had told his longtime partner that a puppy was keeping him company, and that President Donald Trump had given him a tour of Mar-a-Lago. A Kia commercial played when he closed his eyes. He tried to escape and join his family for Easter Sunday. When he was put on a ventilator, Jones hallucinated that doctors glued plastic tubes directly into his lungs.
Spending time in the ICU, especially for anyone with COVID-19, is a dangerous, physically taxing experience: Only the most seriously ill patients land in intensive care, where many undergo a number of complex medical treatments at once, making them even more vulnerable to life-threatening complications. Ten to 30 percent of the sickest, oldest patients who enter don’t make it out. But for survivors, the mental toll can be even more severe than the physical one. About one in three patients who spends more than five days in the ICU will experience some kind of psychotic reaction, which often takes the shape of delirium—an intense confusion that the patient can’t snap out of.
ICU doctors and nurses told me that delirious patients may believe their organs are being harvested, or that nurses are torturing them. A spike in fever might feel like being set on fire. An MRI exam might feel like being fed into an oven. Strange figures might appear on the floors, walls, and ceilings of their hospital room.
Delirium is a symptom of a brain strained by the extreme conditions of intensive care. In the ICU, patients often simultaneously experience sensory deprivation (from heavy sedation, immobility, isolation, and day after day spent in a hospital room) and sensory overload (from intense pain, bright lights, extended ventilator use, and constant prodding from a rotating cast of nurses and doctors). In response, they can become confused, paranoid, or completely lose touch with reality.
Doctors and nurses often struggle to spot delirium, but once they do, a proven playbook exists for treating it. Clinicians turn to low-tech methods such as preserving patients’ sleep cycles, allowing them to wear glasses and hearing aids, avoiding medical jargon, sedating minimally, and encouraging visitors—whatever keeps patients oriented in time and space.
But that was before the coronavirus pandemic. As ICUs across the country fill up with COVID-19 patients, doctors told me that the disease itself is undermining their tried-and-tested methods. Allowing visitors and keeping family at the bedside come at too high a risk of spreading infection, as does getting patients up for regular walks around the unit. And because of the severity of some COVID-19 cases, minimizing ventilation and sedation isn’t always possible. Altogether, critical-care specialists tell me, the pandemic has created a perfect storm for delirium.
“We treat critical illness for a living, but this is fairly extraordinary,” Bud O’Neal, a pulmonary and critical-care physician in Baton Rouge, Louisiana, told me. “This disease is going to test us.”
Ask a delirious patient what time or date it is and they’ll likely look around for a clock or calendar as expected. But ask “Does a stone float on water?” or “Can you use a hammer to cut wood?” or “What are the days of the week in reverse order?” and they may falter. “When you start questioning them, you realize they’re hallucinating,” Sharon O’Donoghue, a nurse in Boston, told me. Sometimes, patients’ delusions are downright chilling: whispering voices that won’t let them sleep, or assassins creeping into their rooms. “Delirium survivors fill in the blanks of a reality they can’t make sense of,” O’Donoghue said. “It’s something we take really seriously, and we try everything we can to keep it from happening.”
But in this moment, O’Donoghue and others told me, patients are unusually isolated, immobilized, and terrified. For one, COVID-19 patients are spending day after day on ventilators (typically double or triple the normal duration for ICU patients with lung problems, according to doctors I spoke with), a known risk factor for delirium. Drug shortages are also leaving some hospitals with no choice but to use sedatives linked to delirium. And clinicians are dressed in head-to-toe personal protective equipment, or PPE, a potentially scary image for many patients.
Not only are COVID-19 patients more vulnerable to delirium, but it’s harder for clinicians to provide the humanizing, intimate care required to stave off delirium when ICUs are filled beyond their capacity. Across the country, hospitals have converted regular wards into makeshift ICUs to keep up with surges in critically ill patients. Many doctors and nurses have also been moved away from their specialties to help with COVID-19 care, and they might not have the training or experience to recognize and treat delirium. “A lot of doctors are going into survival mode,” Chandan Khandai, a psychiatrist at the University of Illinois at Chicago, told me. “People are frustrated that they can’t be the doctor they signed up to be. There’s so much to do and so little time.”
Still, nurses and doctors tending to COVID-19 patients shared with me the countless ways that they’re attempting to overcome the obstacles to care imposed by the coronavirus. What many of them detailed were small and simple moments of compassion. Without family members at the bedside to hold a patient’s hand, caregivers are finding other ways to ensure that isolated patients are treated as human beings, not human bodies. Relatives are encouraged to “visit” loved ones through regular videochats. Megan Hosey, a rehabilitation psychologist who practices in the ICU at Johns Hopkins, printed out and hung family pictures on one patient’s wall, and got another a pair of reading glasses so he could video chat with loved ones. Clinicians are taping photos of themselves to their PPE, so patients can see what they actually look like. At Johns Hopkins, Hosey told me, the glass windows of patients’ rooms now feature handwritten notes about their occupation or the names of their grandkids. “The difference between someone who leans over and says, ‘Hi, Mr. Smith, your mom told me they’re praying for you and that you’ll be okay,’” Hosey explained, “and someone who comes in and out of the room without saying anything, is life and death.”
Others are focusing on keeping patients as comfortable and as mentally stimulated as possible. Pharmacists dispatched to ICUs are prescribing melatonin to help patients sleep at night, and physical therapists are providing physical contact. Some caregivers have encouraged the use of “ICU diaries” to help patients remember what has really happened to them, day by day. Heidi Lindroth, a doctoral researcher and ICU nurse at Indiana University, keeps music playing in COVID-19 patients’ rooms—soothing tunes paired with nature pictures for those who are sedated, and preferred artists for those lucky enough to be awake.
O’Donoghue told me that she’s taking extra care to provide patients with access to their individual interests—headphones for the opera aficionado, baseball-game reruns for the Red Sox fan, glasses and a pencil for the Sudoku enthusiast. “We’re figuring out, how can we make patients feel less alone when you can’t even smile at them?” O’Donoghue said. “You identify what makes a person unique, and use that to reach them. And you can see them, for a few seconds, be them.”
Jen Ludwin knows intimately that survivors of COVID-19 will likely face lingering trauma to their psyches, as well as to their bodies. In 2009, she spent three months in the ICU after falling gravely ill with the swine flu.“I remember waking up and wondering, What kind of nightmare is this?” she told me. “All the sounds from the machines, all the tubes coming out of your body, the people going in and out of the room constantly—it was overwhelming.” That confusion morphed into paranoia and hallucinations of psychedelic colors, an imaginary roommate, and knife-wielding hospital staffers. Her delirium eventually led to PTSD, which she’s still getting treatment for a decade later. “These things don’t go away when you leave the ICU,” she said. “You carry them with you for the rest of your life.”
Delirious patients are at a higher risk of developing dementia and needing ongoing treatment, such as nursing or rehabilitative care, after leaving the hospital. But despite the seriousness of the condition and the established ways to treat it, experts say that ICU delirium remains “grossly underdiagnosed.” Specialists told me they’re hopeful the pandemic will offer a silver lining: a chance to teach health-care providers, as well as patients and their families, that delirium is a common part of intensive care. “There’s no question people are recognizing the importance of delirium right now, since it’s happening at an incredible rate,” Sharon Inouye, a Harvard Medical School professor, said. “I don’t think it’ll be easy, but I’m hoping we can use this as an opportunity to build awareness.”
Chris Thomas, a pulmonologist and critical-care specialist in Baton Rouge, told me he hopes doctors will emerge from the pandemic with an understanding that ICUs are a place where COVID-19 patients’ minds, and not just their lungs, were rescued from the brink of collapse. He imagines a future where doctors constantly check for delirium (using, for example, a simple confusion-assessment method developed by Inouye) as diligently as they already monitor a patient’s heart, lung, and kidney function.
But for now, lots of patients and their relatives enter the ICU with little understanding of the potential mental-health challenges ahead of them. Barry Jones is now free of COVID-19 and slowly recovering from his time in the ICU. The hallucinations and delusions are gone, but he remains astounded by how real those memories still feel. “No one said anything like that could happen,” he told me.