For Many Patients Leaving the ICU, the Struggle Has Only Just Begun

The accident happened in Pittsburgh on Nov. 16. Joseph Masterson, a lawyer who was just days from retiring at age 63, suffered cardiac arrest while driving, plowed into a guardrail, and lost consciousness.

Other drivers stopped, broke the car window, and pulled him to safety. A passing volunteer firefighter performed CPR until an ambulance arrived to take Masterson to UPMC Mercy hospital.

He spent 18 days in the medical intensive care unit there, 14 of them on a ventilator. He developed delirium, a common ICU condition, and needed antipsychotic drugs. Despite a feeding tube, he lost weight. “We honestly weren’t confident that he would pull through,” said Ron Dedes, his brother-in-law.

But he did. Masterson was discharged Feb. 1 and returned home with near-constant family support. Working diligently with several kinds of therapists, he has regained his ability to walk, despite lingering weakness, and to manage his personal care. His once-garbled speech has markedly improved. He can make himself a sandwich.

Now, “our biggest concern is his memory,” Dedes said. Masterson, who so recently handled complex legal matters, forgets conversations and events that happened a few hours earlier, said Patti Dedes, his sister. He can’t yet operate a microwave or place a phone call.

In an interview, he described himself, accurately, as “much, much better than I was” — but misstated his age. Screening tests after his discharge indicated cognitive impairment and depression.

Among critical-care doctors, prolonged symptoms like his are known as “post-intensive care syndrome,” or PICS. The fallout can be physical or psychological, as well as cognitive, and can persist for months or years.

More than 5 million people annually are admitted to intensive care across about 5,000 American hospitals, and research shows that more than half experience such aftereffects. Older age increases the odds.

Patients and families are often startled by these continuing difficulties. “The belief is that they’ll be discharged from the hospital and in two or three weeks, they’ll be back to normal,” said Brad Butcher, who was Masterson’s doctor and wrote about PICS recently in the medical journal JAMA. “That doesn’t comport with reality.”

In fact, with greater ICU use and improved treatments — the Society of Critical Care Medicine estimates that 70% to 90% of adults now survive their stays — the population likely to encounter the syndrome is growing.

“Everyone is grateful that the patient has survived,” said Lauren Ferrante, a pulmonary critical-care doctor and researcher at the Yale School of Medicine. “But that’s just the start of a long road to recovery.” In a study of patients 70 and older that she co-authored, within six months after discharge only about half had returned to their pre-ICU functional ability.

Intensive care patients face a long list of challenges. PICS symptoms range from the physical — weakness, pain, neuropathy (tingling in arms and legs), and malnutrition — to mental health concerns, primarily anxiety and depression. Cognitive difficulties like Masterson’s are commonplace, including problems with memory, attention and concentration, and language.

“For many people, surviving a critical illness is a life-altering experience,” Butcher said. Patients in intensive care after emergency or elective surgery also have high rates of new physical, mental, and cognitive problems a year later.

The same aggressive treatments that save lives contribute to the syndrome. Intensive care patients “have some sort of dramatic organ failure that requires immediate attention” and constant monitoring, explained Carla Sevin, a pulmonary critical-care doctor who directs the ICU Recovery Center at Vanderbilt University Medical Center.

That could mean a breathing tube attached to a ventilator, which in turn often requires sedating drugs. Sedation “can precipitate delirium, and delirium is the key factor in cognitive symptoms,” Butcher said.

It doesn’t help that constant beeps and alarms from monitors and round-the-clock bright lighting disrupt sleep, and that restrictive family visiting hours deprive patients of reassuring faces and voices.

Gregory Matthews, a retired accountant in St. Petersburg, Florida, spent nearly a month in an ICU after a lung transplant in 2014. He still vividly remembers his hallucinations, including mice running across the wall and someone trying to frame him for drug running.

“One day, I thought a doctor was an assassin — I could see the rifle,” said Matthews, now 80. “So I jumped out of bed,” he said, and yanked out his IVs. The staff put his arms in restraints for days.

But immobilization exacts its own toll as patients quickly lose muscle mass and strength. “Our bodies were not meant to lie in bed all day,” Ferrante said.

Psychologically, “PTSD is pretty common, similar to what’s seen in combat veterans or sexual assault survivors,” Sevin said, referring to post-traumatic stress disorder. Families can suffer anxiety and depression along with the patients.

Alarmed by such discoveries, doctors and administrators at about 35 U.S. hospitals have established post-ICU clinics, where teams of doctors, nurses, pharmacists, therapists (physical, occupational, cognitive, speech), and social workers screen for a host of conditions and help guide patients through them.

Vanderbilt’s clinic saw its first patient in 2012. The Critical Illness Recovery Center at the University of Pittsburgh Medical Center, which Butcher founded in 2018, works with about 100 patients a year, including Masterson. Yale opened its clinic in 2022.

They rely on six practices recommended by the Society of Critical Care Medicine that are shown to significantly reduce post-ICU symptoms. The measures call for changes such as using lighter sedation, getting patients up and moving earlier, testing their breathing daily to wean them from ventilators sooner, and removing restrictions on family visiting.

Clinics often offer support groups for patients and families. There’s evidence that keeping an ICU diary, in which patients and caregivers record their experiences, and engaging in exercise and physical rehabilitation improve mental health after discharge.

Also on the clinics’ agenda: discussions of what other options patients might prefer if they face another critical illness, as many do. Would they agree to undergo intensive care and risk its aftereffects again? Or choose palliative care, which emphasizes comfort rather than cure? Some post-ICU patients remain permanently impaired.

Butcher, although he said that the use of the new practices needed to expand dramatically, sounded optimistic about the future of critical care. “We’re going to find better diagnostic tools, better preventive strategies, and better therapies,” he said.

For now, though, the ICU experience remains disorienting and sometimes traumatic. When Butcher asked 117 patients in his post-ICU clinic those next-time questions, many wanted to place limits on further medical interventions.

About a third would want to lower the level of aggressive care. Of those, about a quarter would want “do not resuscitate” and “do not intubate” orders, and almost 7% said they never wanted to return to an ICU.

Masterson is working hard to further his recovery. “I haven’t been out and about much,” he said. “I’ve been kind of homebound.” He hopes to get strong enough to resume running — he used to log 3 to 4 miles several times a week.

The future for patients contending with post-ICU syndrome often depends on their physical, mental, and cognitive health before their admission. Masterson’s previous fitness and cognitively demanding work bode well for his further progress, Butcher said.

His family remains alternatively hopeful and worried. “Down the road, what’s it going to be like?” Dedes, his brother-in-law, wondered. “We just take it day by day.”

The New Old Age is produced through a partnership with The New York Times.