For many ICU survivors and their families, life is never the same
Physical, mental and cognitive problems can last years after covid-19 or other severe illness is conquered
Shannon Casey, a registered nurse, touches the finger of covid-19 patient Brenda Markle in the ICU at UPMC Mercy hospital in Pittsburgh on Jan. 11. Markle endured two long stays in the ICU. (Michael S. Williamson/The Washington Post)By Lenny Bernstein and Dan Keating Yesterday at 6:00 a.m. EST
CONNELLSVILLE, Pa. — When she finally made it home after 54 days in the UPMC Mercy intensive care unit, Brenda Markle was literally helpless. She could not sit, stand or speak. She could not feed herself or use the bathroom.
The occasional transfer from her bed to her motorized wheelchair required the arduous use of a Hoyer Lift; when settled into the chair, she could operate the joy stick with one hand or push a button with her head.
Once a robust 54-year-old nurse’s aide, Markle was still plagued by erratic blood pressure, anxiety, depression and the metallic taste that many covid-19 patients complain of when they eat. She had an ever-growing bed sore that contributed to her eventual death from septic shock, after another 68 days of intensive care.
“A lot of people think after the ICU, if you make it, you come home and your life’s normal again,” said her daughter, Brittany Butler. “Because that’s what I thought. I thought, ‘Oh my God, we’re going to have her back home with us. We’re going to have the same life that we once had.’”
For perhaps hundreds of thousands of people, the coronavirus pandemic has proved it often does not work out that way. Intensive care has saved countless lives since January 2020, but the invasive process can also yield a poorly recognized cluster of serious consequences that together constitute “post-intensive care syndrome.” They are symptoms not of the disease but of the cure.
The worst effects include debilitating weakness and fatigue, post-traumatic stress disorder, anxiety, depression, difficulty thinking, and hard-to-define challenges functioning in daily life. Family members, suddenly thrust into the role of caregivers for a seriously ill loved one, endure emotional and practical difficulties of their own.
Only in recent years have doctors and researchers begun to focus on the long-term impact of their efforts in the ICU to stave off death. Much remains unknown, but growing evidence points to prolonged inactivity, deep sedation, delirium and powerful medications as some of the main causes of serious side effects that can last for years.
Some physicians are considering how they can alter their practices in the ICU to improve results for the people who survive. Earlier physical therapy, lighter sedation and screening for psychological problems are being tested or considered.
“Why is it we high-five when people leave the ICU and then never think about them again?” asked Brad Butcher, head of UPMC’s medical ICU, who treated Markle and has opened one of the nation’s few clinics for post-ICU syndrome.
There appears to be no national tally of the number of people with covid who have spent time in ICUs since the pandemic began. Collectively, patients spend about 21 million nights in intensive care annually, according to data from the U.S. Department of Health and Human Services. Since the agency started releasing consistent data in July 2020, about a quarter of the ICU beds were occupied by covid patients.
The HHS data does not break out the number of individual patients who spent time in an ICU , or the average length of stay. It instead counts the number of days that ICU beds were occupied. It is unclear whether covid patients increased the overall use of ICUs or occupied the beds of other seriously ill people who would have been there in a normal year.
A 2018 study revealed that 64 percent of critically ill patients had at least one physical, cognitive or mental health problem three months after release from the ICU. At 12 months, 56 percent were still affected.
A 2013 study showed that 12 months after they left an ICU, about 25 percent of patients had cognitive difficulty similar to that seen in patients with mild Alzheimer’s disease, and about a third had impairment akin to people with moderate traumatic brain injury. The longer their delirium in the ICU, the worse their thinking and executive function were later, the researchers found.
A 2016 review of the medical literature found that about 30 percent of ICU survivors suffered depression in the year following their admission.
“It makes me want to cry,” said Connie Bovier, a 61-year-old Pittsburgh woman with chronic obstructive pulmonary disease who has been in the ICU twice since 2018. Thoughts flit through her mind quickly and randomly, she said, like a riffled deck of cards. She cannot focus. She has short-term memory problems. She is repeatedly distracted.
“I just want to get it together,” Bovier said. “It’s been a long time, and I just want to get it back. I feel like I need a life coach. Something. I feel like I can’t get it together.”
‘It was a roller coaster’
Neil Butler and Brenda Markle met in this small town southeast of Pittsburgh. “I met her down at the Moose Lodge in Connellsville, about 35 years ago. She was bartending,” he remembered. They lost a newborn after 31 days in neonatal intensive care. They raised three children — Brittany, 28, Neil Jr., 24, and Breanna, 20 — in the small home Markle liked to decorate elaborately for every holiday.
Butler brought a small Christmas tree and other decorations to her tiny room in the ICU while she fought covid over the 2020 holidays. Most days, he would awake at 3 a.m., work his shift as a supervisor at AmeriGas Propane in Ruffs Daleand drive 50 miles to the hospital to sit by her side, though she was often unconscious from sedation.
The coronavirus had found its way into their home after a relative’s visit. On Dec. 2, 2020, Butler and his son woke early to go hunting, but found Markle on the couch soaked in her own urine. She could not stand on her own. The virus had raised her blood sugar to seven times its normal level.
Doctors at a nearbyhospital diagnosed her with a urinary tract infection and covid and sent her home. But her condition continued to worsen and two days later, paramedics raced her to UPMC Mercy.
Over the next 54 days, 26 of them on a ventilator, Markle fought assault after assaultfrom the disease and its toll on her body. She developed seizures, a blood clot in her lungs, bacterial pneumonia and diabetes. She could not clear secretions from her lungs. Her blood pressure rose and fell.
“It was a roller coaster. It was an up and down. I was scared,” Butler said. “Her blood pressure would go up and down. Her heart rate, her pulse — everything was like out of whack.”
A bed sore developed on her tailbone. By the time Markle died in Julyit was so large that Butcher could put his fist in it andso deep he could see the bones of her pelvis.
The family refused to consider any outcome other than Markle returning home. “They were convinced, without a doubt in their mind, that she was going to be reunited with them at home,” Butcher said. “And that spilled over to the care team as well. We all wanted that to happen.”
Somehow it did. After nearly eight weeks, Markle was moved to a regular hospital floor. Nine days later she began six weeks of rehabilitation in the hospital. On March 26, she went home. The family celebrated. They put her hospital bed in the living room, and Neil Butler slept on the couch next to her.
“I didn’t know which way it was going to go. I knew it was a 50-50,” Brittany Butler said. “But I had expected when she got to rehab that she was going to make a full recovery. She never did.”
Markle could not move her right side, her family said. She remained catheterized. She had to relearn how to move her arms and legs. Her vocal cords were partly paralyzed. She ate little beside canned peaches and broth, her family said.
Speech, physical and occupational therapists visited her home to develop strategies for Markle and the family. They wrapped her utensils in towels so she could hold them. Her family brushed her teeth. They tended to her skin ulcer. They held the phone near her hand. She could press it once and unlock it.
Eventually she became able to bench press a broom stick and fashion cones out of clay. But her physical disabilities were overwhelming.
“It is very difficult to get people the care they need,” said Carla Sevin, director of the ICU Recovery Center at Vanderbilt University Medical Center. “And sometimes the care they need is someone saying to you what you’re experiencing is not unexpected.
“We know that most people could benefit from more support than they’re getting, which right now is kind of zero.”
‘You’ve lost control of your life’
ICU acquired weakness is much more debilitating than simply being out of shape from lack of activity. Even the muscles in the ribs and neck that help the lungs clear secretions become too weak to do their jobs.
When The Washington Post observed Markle in the ICU in January, she was off the ventilator but effectively motionless. She could muster only a slight nod of her head in response to questions.
“It is a real thing. It is profound,” Butcher said. “That seems impossible, that someone can be that weak. But it’s true. It’s absolutely true.”
Patients also report terrifying nightmares or delusions while under sedation that can foreshadow post-traumatic stress disorder after they recover. Covid patients often are put under deeper sedation, for longer periods of time, than other ICU patients because they are often intubated longer than patients with other diseases.
“One of the risk factors for development of PTSD is having those frightening or delusional experiences,” said Ann Parker, an assistant professor of pulmonary and critical-care medicine and co-founder of the Johns Hopkins Post-Acute Covid-19 team.
They have “very vivid memories of a frightening experience — ’I thought I was being stabbed in my chest,’” she said. “In talking it through with them, you realize, well, they did have a chest tube placed.”
At Mercy’s PICS clinic, Bovier was visited by a parade of caregivers. The former phone company cable splicer is tethered to an oxygen tank and dependent on a variety of medications. Still, her lung function is declining. Once a heavy smoker, she still puffs on one or two cigarettes a day. Somehow, she is doing better than the medical tests indicate she should.
A pharmacist went over her medications. A respiratory therapist checked her pulmonary results. An occupational therapist made sure she could still take care of herself, that she could drive, cook and tend to her home. A physical therapist tested her stamina.
But it is her brain fog and inability to move forward that plague her most. “You’ve lost control of your life,” she said. “Not that you ever had it. But we all think we do have it. And this reminds you every day that you don’t have it.”
She used to enjoy working through her to-do list. “Now a good day is being able to make a to-do list,” she said. “It piles up. What does that do? It overwhelms you. And what does that do? It depresses you.”
Butcher came into the examining room last. He arranged for her to visit a handful of specialists, including one to help her cope with her cognitive and functional deficits.
He had one more topic to gently address. “You know that your lungs are really bad,” he told her. “So you know that if you were to get a breathing tube again, it would be really hard to take the tube out.”
Did Bovier want to write an advance directive that would instruct doctors about intubation, CPR and other lifesaving measures, to save her children from deciding those issues in an emergency? How long should doctors try to keep her alive in a crisis?
“That’s hard Brad, because you know my faith,” Bovier said. “And you already know that I shouldn’t be here. But I’m here for some reason. And my faith says to trust. So you know what I’m trying to say? It’s hard for me to say cut the cord, pull the plug. It’s hard for me to say don’t give up until the end.”
Bovier and Butcher agreed that she and one of her sons would discuss the issue.
‘They don’t see it with their brains, or with their hearts’
A month after she arrived home, Markle’s blood pressure plunged again, and she was taken to a nearby hospital. After three weeks, when the doctors broached scaling back efforts to save her and switching to comfort measures, the Butlers, outraged, moved her to UPMC Mercy’s ICU again.
There she survived for 68 more days, her medical condition even worse than it was during the first stay. She went on 24-hour dialysis when her kidneys failed. She had frequent seizures that required four different medications. The sac around her heart twice filled with blood, causing cardiac arrests as doctors raced to drain it.
Markle was “capable of being kept alive by technology and medication,” Butcher said, “but without any of that technology or medication would not be able to survive.”
The family urged him to continue fighting. “It’s really hard to divorce them from this idea that if we just manage all these details everything will be okay,” he said. “They see it with their eyes, but they don’t see it with their brains, or with their hearts.”
Markle was improving slightly just before she died. She was off the ventilator for parts of some days, and she asked to sit upright in her chair.
On July 30, she unexpectedly went into cardiac arrest again. Butcher began CPR, then a nurse brought Butler in.After a few minutes, he asked Butcher to stop.
The two men wrapped their arms around each other and wept.