LULU GARCIA-NAVARRO, HOST:
Patients coming off a ventilator typically take hours, even a day to wake up as the drugs that help them tolerate the machine wear off. But with COVID-19, doctors are finding that some patients can linger unconscious for days, weeks or even longer. From WBUR in Boston, Martha Bebinger has this story.
MARTHA BEBINGER, BYLINE: While Frank Cutitta lay in an ICU at Massachusetts General Hospital, doctors called his wife Leslie Cutitta twice to have what she remembers as the end-of-life conversation. Frank did not die. After nearly a month, Frank's lungs had recovered enough to come off a ventilator. But then Frank did not wake up.
LESLIE CUTITTA: It was a long, difficult period of just not knowing whether he was really going to come back to the Frank we knew and loved. It was very tough, very tough.
BEBINGER: And prompted more questions about whether to continue life support. Leslie wrestled with the life doctors asked her to imagine.
L CUTITTA: If this looks like Frank's not going to return mentally and he's going to be hooked up to a dialysis machine for the rest of his life in an acute long-term care facility, is that something that you and he could live with?
BEBINGER: Every day, sometimes several times a day, Leslie Cutitta would ask Frank's doctors, what's going on inside his brain? Why is this happening? The candid answer was, we don't know.
Dr. Brian Edlow is a critical care neurologist at Mass General.
BRIAN EDLOW: Because this disease is so new and because there are so many unanswered questions about COVID-19, we currently do not have reliable tools to predict how long it's going to take any individual patient to recover consciousness.
BEBINGER: Or what their mental state might be if or when they do. This spring, as Edlow watched dozens of patients linger in this unconscious state, he reached out to colleagues in New York to form a research group. They're sharing data with the goal of figuring out which patients recover, what treatment helps and why some patients are not waking up.
EDLOW: There's several potential reasons for this, one of which is that we are having to administer very large doses of sedation to keep people safe and comfortable while they're on the ventilator.
BEBINGER: Frank, for example, was on a lot of sedatives for a long time - 27 days on a ventilator. Edlow says some patients have COVID-related inflammation that may disrupt signals in the brain. And in some patients, COVID triggers blood clots that cause strokes.
EDLOW: So there are many different potential contributing factors, and the degree to which each of those factors is playing a role in any given patient is something that we're still trying to understand.
BEBINGER: They also want to know how many COVID patients end up in this prolonged sleeplike condition. Dr. Jan Claassen, a neurologist at New York's Columbia Medical Center, is part of the research group working to answer that question.
JAN CLAASSEN: In our experience, approximately every fifth patient that was hospitalized was admitted to the ICU and had some degree of disorders of consciousness. But how many of those actually took a long time to wake up? We don't have numbers on that yet.
BEBINGER: Claassen says he's guardedly optimistic about recovery for these patients, but there's growing concern about whether hospitals overwhelmed by COVID patients are giving them enough time to recover. Many hospitals wait 72 hours, or three days, for patients with a traumatic brain injury to regain consciousness. After that, doctors often begin conversations with the family about ending life support. Dr. Joseph Giacino, who directs neuropsychology at Spaulding Rehabilitation Hospital, says he's worried hospitals are using that 72-hour model now with COVID patients who may need more time.
JOSEPH GIACINO: We need to really go slow because we are not at a point where we have prognostic indicators that approach the level of certainty that we should stop treatment because there is no chance of meaningful recovery.
BEBINGER: Take Frank Cutitta as an example. After two weeks of no sign that he would wake up, Frank blinked. Leslie and her two daughters watched on a screen, elated, making requests.
L CUTITTA: You know, smile, Daddy. Hold your thumb up.
BEBINGER: It was another week before Frank could speak, before the family heard his voice.
L CUTITTA: We would all just be pressing the phone to our ears, trying to catch every word. And he didn't have a lot of them at that point, but it was just amazing - absolutely amazing.
BEBINGER: The doctors eventually discharged Frank, but he had to spend a month at Spaulding, the rehab hospital. He's home now, doing physical therapy. Frank has no cognitive problems. The Cutittas say they feel incredibly lucky.
L CUTITTA: 'Cause at one point, this doctor said to me, if Frank had been anywhere else in the country but here, he would have not made it.
BEBINGER: The doctor said most patients in Frank's condition in New York, for example, died because hospitals could not devote so much time and resources to one patient.
L CUTITTA: And that's a conversation I will never forget having 'cause I was stunned.
FRANK CUTITTA: We did have an advocate in the system...
BEBINGER: Here's Frank last month, back at home with Leslie.
F CUTITTA: ...Who could have gone the other way and said, look; this guy's just way too sick, and we've got other patients that need this equipment, or we have an advocate who says, throw the kitchen sink at it. And we happen to have the latter.
BEBINGER: The first data is expected out soon of known COVID patients like Frank who linger in a prolonged coma.
For NPR News, I'm Martha Bebinger in Boston.
GARCIA-NAVARRO: This story comes from NPR's partnership with WBUR and Kaiser Health News. Transcript provided by NPR, Copyright NPR.