The doctors were standing in the corner of Cheryl Misak’s room, wearing little Christmas party hats and getting more and more drunk. Then, they stripped naked and paraded the patients around the intensive care unit one by one, taunting and humiliating them to their giddy delight.
The delusion felt completely and utterly real, one of many that became seared into Misak’s mind after she nearly died in a Toronto ICU from acute respiratory syndrome and sepsis caused by a devastating infection.
In 1998, the philosopher and former University of Toronto provost survived serious multiple organ failure. But she also experienced terrifying moments of “utter insanity” in the ICU. She left hospital so frail and emaciated she refused to have her picture taken.
With the slightest exertion, searing nerve pain shot up her body like fire, from the soles of her feet to her neck. She couldn’t sleep; the sounds of the ICU stayed with her for a year — the whoosh and beep of the ventilator, the patients moaning in pain or anguish in the beds next to her. She would break into a cold sweat at the sound of an ambulance siren.
Misak experienced forms of a terrifying phenomenon researchers have only begun to fully grasp.
Tens of thousands of Canadians who survive a life-threatening illness or injury every year are left with new and profound thinking, memory and psychological problems that can make them feel as if they are losing their minds, say Canadian researchers leading the largest study of its kind of ICU “survivors” and their caregivers.
The problems can linger for months, sometimes years. Some people never recover.
The phenomenon has been dubbed “post-intensive care syndrome.” It is a constellation of symptoms that can include devastating muscle weakness, cognitive dysfunction on the order of early Alzheimer’s disease or moderate traumatic brain injury, anxiety, depression and full-blown post-traumatic stress disorder.
One study published in April found 25 per cent of those who survive an ICU admission have symptoms of post-traumatic stress disorder (PTSD) between one and six months after leaving hospital.
That’s as high as those seen in combat soldiers or victims of rape, says the study’s co-author Dr. Dale Needham, a Canadian-born and trained doctor, now a professor of medicine at Johns Hopkins University School of Medicine in Baltimore.
They become the “forgotten patients,” experts say, struggling to understand why they’re having such a hard time returning to “normal” after being pulled from death.
“People will tell me, ‘I should be grateful, you saved my life,’” says Dr. Margaret Herridge, a professor of medicine at the University of Toronto and a world expert in the legacy of critical illness.
Instead, some hit rock bottom, and suffer such paralyzing depression they have thoughts of killing themselves.
More than 250,000 people are admitted to ICUs every year in Canada. Seventy-five per cent survive to be discharged. Of those, up to half will experience symptoms of post-ICU syndrome. People of all ages are at risk, and the pool of ICU survivors will only swell, as baby boomers grow older, and sicker.
It’s not clear what’s driving post-ICU syndrome. Some believe it is a brain dysfunction caused by the illness or injury itself. But what’s done to patients in the ICU — including frequent overuse of sedation and physical restraints that can make them feel as if they’re being imprisoned or tortured — can also drive the after-shocks of intensive care.
The old thinking was that deep sedation decreases agitation and makes people less likely to pull out breathing tubes or interfere with their care in other ways. Doctors also believed that it would be far more psychologically disturbing for patients to be awake and alert, than heavily snowed under with drugs.
But high doses of some sedatives may contribute to ICU delirium — widespread brain dysfunction that can promote paranoid delusions the brain lays down as “real” memories, Herridge says.
Slices of reality get completely distorted, she explains, often whipped into “persecutory” delusions that someone is trying to hurt, even kill them. People have had delusions they were stabbed in the neck with a knife when a central line was inserted into a large central vein, or sexually assaulted when a catheter was inserted into the femoral artery in their groin.
“I’ll tell people I can assure you that you were not sexually assaulted in the ICU,’ and they’ll say, ‘How do you know that for sure?’ ” Herridge says.
Some patients have described blood seeping from the walls and floors, or rats racing in the room, or children with no faces.
“Back when I started, everybody was heavily sedated. We didn’t want to wake them up until we thought they were getting better,” says Louise Rose, TD nursing professor in critical care research at Sunnybrook Health Sciences Centre in Toronto.
But research shows delusional memories — or none at all — are far more harmful than lucid and accurate ones. While the move now is to use less sedation, some patients still emerge from the ICU completely amnesic, the entire period a total blackout. One patient who spent months in an ICU once told Rose, “I have no memory, and I still find that no memory terrifying.”
Others can leave the ICU feeling weak, anxious and depressed. Many are unable to return to work. Marriages can break apart.
But unlike heart attack or stroke survivors, there is no standard followup care for ICU patients, a situation Herridge finds incredible.
“I think this is why we’re on a crusade about this — why on Earth do we invest so much in the ICU, and the critical illness portion of this person’s care, but we’re not investing in their recovery? It makes no sense.”
In April 1998, then a 38-year-old mother of two young children, Misak woke one night with “screaming pain” in her joints. She assumed she had caught her six-year-old son’s flu.
Two days later, barely able to walk and her blood pressure plummeting, she was rushed by ambulance to the ICU, where doctors frantically began pumping antibiotics into her. Her kidneys had shut down; her lungs were starting to collapse.
She was connected to a ventilator and put in a drug-induced coma. Tests showed invasive group A streptococcus, toxic bacteria that can eat away at the flesh, causing amputations.
“When it gets into your respiratory tract, it’s even worse, because they can’t hack off the infected limb,” Misak says.
She has early flickers of memories, “but it was when I was being brought out of the drug-induced coma that I became fully psychotic,” Misak remembers.
She was convinced one of the doctors was trying to kill her. With a tube down her throat, she couldn’t speak; she could barely raise her hand. She was desperate to get off the breathing machine and hallucinated the ICU team went to each bed and “merrily extubated” every single patient, except her.
Misak says being on a ventilator “was awful beyond belief.” Research suggests one in three ICU patients who require mechanical ventilation experience symptoms of PTSD that can last up to two years. Heavy sedation can also increase the time patients are on ventilators.
In Canada, hundreds of ICU beds are filled every day with medically stable patients who have been on a ventilator for 21 days or longer.
Specialized “weaning” programs can succeed in liberating 60 to 70 per cent of them. But only a few exist across the country — the largest at Toronto East General Hospital.
“These are the sickest of the sickest of the ICU survivors,” says respirologist Dr. Ian Fraser, medical director of the hospital’s prolonged-ventilation weaning program. The patients here have been on ventilators, on average, two months.
“It’s almost as if they have survived the acute illness but now suffer from the consequence of every last reserve in their body being drained,” he says.
At the weaning centre, a highly skilled team works to try to get patients breathing on their own again: there is less noise, more privacy and minimal or zero sedation. The goal is to have no long-term ventilation patients in any ICU in Ontario, because the longer someone is on a mechanical breathing machine, the greater the risk of dying, or never coming off.
Canadians are also leading efforts to minimize the use of powerful sedatives, and to screen for delirium in the ICU, and treat it aggressively. Herridge and her team are pushing for national standards for organized ICU followup and rehabilitation, through their RECOVER program with the Canadian Critical Care Trials Group.
Today, Misak travels the globe, speaking at medical meetings about her near-death experience in the ICU. She has written about the challenges in deciding whether a seemingly competent patient is actually fit to make decisions about his or her care.
In the ICU, she appeared perfectly competent: She responded to the doctors’ questions. She sat in bed, reading the London Review of Books. Inside, she was a “psychological mess,” secretly filled with fear and loathing for her lifesavers.
Misak says patients and families need to be educated about ICU delirium and what may follow in the weeks, and months, after being discharged.
“We owe it to our most vulnerable patients that their care doesn’t stop when they exit the doors of the ICU,” she says. “These things can happen to any one of us.”