Doctors and nurses say one of the toughest parts of their job is counseling anguished families about a loved one’s chances of waking up from a coma.
Now a new study by Boston and New York researchers offers hope and some guideposts.
It focuses on individuals who have come off of ventilators but still require life support. At that stage, patients remain hooked to machines that deliver life-saving medicine, food, and hydration as doctors regularly check their ability to respond to a voice command. If there isn’t a response in the first few days, families can start to lose hope.
In the study, researchers found that most patients with severe COVID-19 regained consciousness even after spending weeks in a coma.
The study’s findings will be a “huge anxiety reducer” for families, said Daiwai Olson, a professor of neurology and director of the neuroscience nursing research center at the University of Texas Southwestern Medical Center.
“It gives nurses and physicians the confidence to tell families, ‘look this can take several weeks,” he said. “We have had moms want to stay at the bed side, and we can tell them go home and take a shower, it may take three weeks” for the patient to regain consciousness.
The findings add to a growing body of evidence that suggests families and physicians should wait longer before withdrawing life support from people in a coma.
“Many families say their loved one would not want to continue living if they were unconsciousness or in a vegetative state,” said Dr. Brian Edlow, a co-senior author of the study and an associate director of the Center for Neurotechnology and Neurorecovery at Massachusetts General Hospital.
“The underlying message [from this study] is simple: If you give people enough time most, but not all, people who have severe COVID will ultimately recover consciousness,” Edlow said.
The study, published in the Annals of Neurology, analyzed outcomes from 795 COVID patients who were on a ventilator for at least seven days during the first wave of the pandemic in spring 2020.
The researchers found that 72 percent of the patients survived and ultimately recovered consciousness. For those who survived, 25 percent recovered consciousness 10 or more days after coming off the breathing machine, and 10 percent took more than three weeks. The researchers studied a separate, smaller group of patients from the second surge, through April 2021, and found similar results.
The patients were treated at Mass General and two other facilities within the New York-Presbyterian Hospital system: Columbia University Irving Medical Center and Weill Cornell Medical College.
Dr. Jose Suarez, professor and chief of neurosciences critical care at Johns Hopkins University School of Medicine, said such delayed awakenings match what he has witnessed caring for patients in a coma after traumatic brain injuries or cardiac arrest.
“We found that in the past, if the patients came in with post cardiac arrest, people thought the prognosis was universally poor, but we have learned that waiting longer [for them to wake up] is the way to go,” said Suarez, who was not involved with the COVID study.
The study found that the more episodes of low blood oxygen a patient experienced while in a medication-induced coma, as a ventilator pushed air into their weakened lungs, the longer it took them to wake up and be able to follow a simple voice command, such as giving doctors a thumbs up or squeezing their hands.
The researchers did not track patients’ progress after they left the hospital. And research about life after a prolonged time on a ventilator is still relatively new. But the experience, experts say, can have lasting effects on a patient’s mind and body for weeks and months afterward. It can include severe physical weakness and brain fog, as well as depression.
One of the Mass General COVID patients who took nearly three weeks to wake up after 40 days on a breathing machine is Hung, a 49-year-old Greater Boston resident who was hospitalized with COVID in April 2020. On that momentous day, doctors asked him to blink his eyes and open his mouth, and finally, Hung was able to do that.
(Hung and his wife, Doris, asked that their last name not be used to protect their privacy.)
Before COVID, Hung was a strapping 5-foot 11-inch, 240 pound, high-octane leader of a group home for people with disabilities. Today, after nine months of hospitalization and rehabilitation, followed by more than a year of physical therapy at home, Hung is 150 pounds and has trouble rising from a wheelchair. He has regained much of his cognitive skills but is quiet and reserved.
“I had to make so many decisions I never thought I would have to make,” said Doris, an intensive care nurse who was taking care of COVID patients at another hospital during the tense long weeks her husband lay in a coma. She was making life-and-death decisions about his care, even as doctors were unable to say whether Hung would survive and have a decent quality of life if he did.
There were dozens of setbacks, as his liver and other organs failed. And then five months of grueling rehabilitation in another facility. Today, Doris works nights and cares for Hung and their 9-year-old son by day, with the help of her parents.
Despite their grueling odyssey, Doris says families with a loved one in a coma should not give up.
“I have patients that have been intubated more or less than my husband has been and they will pull through, but it will be a long journey,” she said.
Recent research using sophisticated machines not typically used in clinical care has revealed electrical signals in the brains of some coma patients who hadn’t yet regained consciousness, indicating the brain was responding to a voice command or other stimulus, even if the patient outwardly was not.
“Just because someone is not responsive clinically, they might be responsive in some sort of brain function, but we don’t have those tools to use that routinely,” said Dr. Claude Hemphill, professor of neurology at the University of California San Francisco and chief of neurology at Zuckerberg San Francisco General Hospital.
Hemphill said these patients are the ones who are more likely to regain consciousness.
“We are at the early stages of this but when I see studies like this [Mass General COVID study], I go back to every neuro ICU doctor or nurse, where we say we had a case and said ‘Gosh, I didn’t think that patient was going to wake up and they did,” Hemphill said.
“It doesn’t mean the person did something they weren’t supposed to,” he said. “We just weren’t smart enough to know it at that time.”