Survivors of severe coronavirus cases are battling delirium, including terrifying hallucinations and disorientation

• Many coronavirus survivors who have spent weeks or months on ventilators in the ICU are experiencing delirium, which can involve terrifying hallucinations and lead to long-term consequences.

• The after-effect is common after long ICU stays, but may reach "epidemic" levels among coronavirus patients, , one expert said.
• Coronavirus patients seem to be especially susceptible to delirium due to physical isolation, medication shortages, and lengthy ICU stays, among other factors.
• Still, most survivors are predicted to overcome the potential psychological consequences, especially if healthcare workers continue to be creative in how they avert them.

Occupational therapist Alyssa Gartenberg was working with a coronavirus survivor on her rehab protocol when the patient burst into tears. Her husband, the woman said, had died from COVID-19, the disease caused by the coronavirus.

Gartenberg had no idea and felt awful. "She was almost hysterical," Gartenberg, who works at Rusk Rehabilitation at NYU Langone Health, told Insider.

But when, post-appointment, Gartenberg talked to a nurse who had been caring for the patient, she learned the husband was alive and well, calling the hospital staff daily.

Gartenberg had been duped by the patient's delirium, a relatively common but often terrifying post-ICU effect that can involve vivid hallucinations, disorientation, irritability, and a range of other cognitive changes.

The condition seems to be consuming COVID-19 survivors, with one study suggesting as many as 65% experience it, and one expert calling it an "epidemic" on its own.

The reasons it seems to be so prevalent, experts say, aren't just because coronavirus patients have spent long stretches in the ICU and on ventilators, but also due to factors unique to the virus, like isolation and the use of heavy sedative medications.

The phenomenon is troubling to healthcare professionals who understand the long-term consequences of delirium; patients, who can't shake nightmarish hallucinations; and their families, who may have their loved one back physically, but not mentally.

"I thought I just had a lung disease. Why am I crying? Why can't I think straight for more than five minutes?" post-ICU patients often think, Dr. Craig Weinert, a pulmonologist and critical-care physician at the University of Minnesota, told Business Insider. "That's the part that's unexpected, and therefore particularly bothersome."

Features of the coronavirus pandemic likely make delirium more prevalent, and its effects more pronounced

Doctors have long known that spending time on a ventilator in an ICU can lead to delirium, with one 2017 study even finding that 80% of patients on a ventilator experienced it.

While there are proven ways to mitigate the issue, it seems to be caused by many factors, including limited oxygen intake, sedative medication, and being in a strange environment.

"Your whole world shrinks down to your bed," Weinert said. You can't talk, feed yourself, or go the bathroom on your own; you don't know day from night; and you're surrounded by professionals whose presence reminds you that you could die at any moment, he said.

But while any life-threatening illness that brings a patient to the ICU can prompt delirium, experts worry that several factors unique to this disease are making COVID-19 patients even more susceptible.

For one, the virus itself may invade the brain in ways that contribute to delirium, though researchers are still understanding this potential effect.

Plus, COVID-19 patients who tend to have the most serious cases are those with the types of underlying conditions — including older age — that also make them more susceptible to ICU-related delirium.

Coronavirus patients also tend to be isolated during their treatment and, depending on the hospital protocol, during their rehab. That means, while they're ventilated, a loved one isn't talking to them, holding their hand, reminding them where they are, and shutting the blinds at night — all the kinds of actions that can reduce the chances of delirium.

"That's what makes this population that much more demanding and different from the average ICU patient," Gartenberg said.

Then, there are the medications. Due to shortages, doctors may be using more of the types of drugs linked to delirium than they otherwise would. And they're often doing it for longer.

"I've never seen anything like this in my nursing career, ever, because patients are on ventilators for like over a month, which is crazy," a nurse working in a Long Island ICU told Insider.

Add in clinicians, who may be too overwhelmed to take over the actions typically handled by family members, and who may look alien in their PPE, and you're got "a perfect storm of not-good things," Dr. Sharon K. Inouye, a professor of medicine at Harvard Medical School who developed a program that's estimated to reduce the incidence of delirium by 40%, told the University's news service.

Delirium can take many forms and is often unpredictable

Gartenberg has also worked with a coronavirus survivor who, when she awoke from a coma, thought she had been transported to Canada, where she met the actress Brittany Snow.

Most COVID-19 patients' hallucinations seem to be much graver.

Coronavirus survivor Leah Blomberg told the Atlantic she woke up convinced nurses were trying to kill her by sawing off her arms and legs. Another survivor said he watched his own funeral.

In the Survivor Corps Facebook group, family members of coronavirus patients have shared stories about their loved ones trying to check themselves out of the hospital, being certain they are at the mall or a state fair with an urgent mission to accomplish, experiencing vivid "memories" of screaming on a roof while children burned, and feeling devastated by a friend's death that didn't occur.

Gartenberg said delirium can fluctuate by the hour. It can be hyperactive, where patients are wired up and agitated, or hypoactive, where they're sluggish and dazed. A single patient can experience both forms.

The experience isn't just distressing to patients and family members, but worrying to healthcare providers since, for one, if a patient is too sad, angry, agitated, or lethargic to engage in rehabilitative therapies, their recovery is stalled.

"Delirium holds up progress because half the battle is having them attend to you," Gartenberg said. "They could be looking at you, but nothing's there." Coronavirus survivors also can't always tell her who to call or even what their phone passcodes are so that she can get a family member on video to be a virtual part of the therapy.

The condition is also a "strong predictor" of needing to stay in the ICU longer, suffering long-term cognitive mortality, and even death, one study showed.

Patients with delirium may also struggle with other symptoms, including generalized weakness and poor mood, which together, make up post-ICU syndrome, a condition that affects up to 33% of ventilated patients and 50 percent of patients who stay in the ICU for at least a week.

While the condition typically isn't debilitating enough to reach a clinical level of depression or anxiety, it can drain survivors and their family members for months or years, according to Weinert, who studies the mental health outcomes of ICU patients.

In rarer cases, the cognitive effects are persist ant and life-altering enough to yield a clinical diagnosis like medical PTSD, which research has shown affects about 10% of ICU patients.

This outcome also may be more likely among coronavirus survivors, in part due its link to how threatened patients feel by the disease, Renée El-Gabalawy, a clinical psychologist at the University of Manitoba, where she runs the Health, Anxiety, and Trauma Lab, told Insider.

Most coronavirus survivors will likely overcome the psychological consequences

When Michael Goldsmith awoke from his 22-day medically induced coma in early April, he thought he'd already been brought back to consciousness a week prior. According to his wife, Goldsmith thought he'd been in a coma for two years.

"It was a surreal experience," Goldsmith, a New Jersey dad who, while unconscious, was the center of a publicized battle against the pharmaceutical company Gilead as his family fought for access to an experimental treatment, told Insider.

To the family's delight, the delirium has since faded. His most persistent side effects include hearing loss, fatigue, and numbness on his skull. "We are hopeful those things will resolve in time," his wife, Elana, told Insider. "All in all, he's doing amazing, and we are extremely thankful at his amazing progress post-COVID."

She credits the healthcare team for much of Goldsmith's survival and recovery. A nurse's aid held his hand when the family couldn't, and others suited up to hold a phone to Michael's ear as his son told him he'd lost a tooth.

"They had to become social workers and therapists for families too," Elana said.

Research so far suggests Goldsmith is among the majority of COVID-19 patients, who won't face long-term psychiatric problems.

His experience with the healthcare team is especially elucidating. If hospital staff can take small actions but meaningful actions, like dimming the lights at night or putting pictures of themselves on their gowns so patients can better recognize them, patients will have better outcomes, Inouye, the Harvard physician, said.

"It's also been wonderful to see new ways hospitals have devised to connect patients with family members and the outside world in secure ways. People are so creative in times of crisis," she said. "Everybody is reaching out and helping one another."