When a health crisis abates, patients may continue to suffer

December 1, 2019

UPMC Mercy's Critical Illness Recovery Center cares for ICU patients with persistent mental or physical impairments


Fran Fabian, 71, was admitted to a Pittsburgh-area hospital in August 2018 for routine gallbladder surgery. Following the procedure, she awoke with a horrible headache, and began sweating profusely and vomiting. Medical staff assumed she was just having a bad reaction to drugs and sent her home to sleep off lingering effects when the post-anesthesia care unit closed at night.


Fran Fabian got help at the Critical Illness Recovery Center at UPMC Mercy hospital in Pittsburgh after a lengthy hospital stay, including eight days in intensive care, left her frustrated, frightened and out of touch with herself.

The next day, when she was unable to stand or feel her feet, her son called paramedics. They arrived to find her blood pressure at an alarming 220/180. Fearing she had suffered a stroke, they rushed her to UPMC Mercy, where she was diagnosed with a subarachnoid hemorrhage and placed in intensive care.

Fabian claims she has only one vivid memory of her eight-day stay in ICU. "I awoke at one point, saw a crucifix in my room and said, 'Dear Lord, if this is my time to come be with you, then it's my time,'" she says. "Other than daily visits with a priest, I have only vague snippets of recollections — my family being around me or a nurse giving me something in an IV."

Lingering brain fog
Fabian spent a total of 34 days in the hospital and at a rehab facility, where she coped with weakness in her right leg, a partial face droop, severe speech problems and bowel and bladder issues from prolonged catheterization. When she finally went home, Fabian says she began to feel like she had been "abducted by aliens." "I was not myself anymore, and I certainly didn't recognize my life. I wasn't functioning like I did before, and I was frustrated and frightened."

Her symptoms included an inability to concentrate or stay on task, as well as anxiety and depression. "If my brain wasn't scrambled before I went to the hospital, it certainly was when I came out. I felt like I was losing my mind, and I worried that this might be the beginnings of dementia," she says.

Lucky for Fabian, UPMC Mercy had just launched its Critical Illness Recovery Center in May 2018 under the direction of Dr. Brad Butcher, co-director of the medical and surgical intensive care unit there, and Tammy Eaton, a nurse practitioner who has spent most of her career in critical and palliative care.

Connie Bovier, center, and her daughter, Celeste Lapen, left, take part in a peer support program for former ICU patients and family members at UPMC Mercy in Pittsburgh. Bovier spent 22 days in the intensive care unit in 2018. Maria Shoemaker, right, is an occupational therapist in the hospital's Critical Illness Recovery Center. Nate Langer/UPMC

The center's goal is to address in a multidisciplinary, holistic way the problems associated with what is now recognized as post-intensive care syndrome. An array of providers — from intensivists and critical care specialists to occupational, physical and respiratory therapists as well as dietitians, social workers, pharmacists and speech/language pathologists — work together at the center to tailor a program specific to each patient's needs and goals.

Fabian says the program is helping her cope with problems she experiences after being in the ICU for stroke care.

ABC's of ICU care
Butcher recalls that when he was training in critical care medicine, the staff would rejoice when patients left the ICU. "The thinking was, 'High five, they're alive!,'" he says. "It's only been in the last 10 years that we have begun to ask ourselves what kind of life those patients are returning to."

Part of the Society of Critical Care Medicine's proactive response to mitigating post-intensive care syndrome symptoms (see below) has been to recommend a critical care "ABCDEF Liberation Bundle," which is now used in many hospital ICUs nationwide. "A" is for assessing, preventing and managing pain; "B" is for both spontaneous awakening and spontaneous breathing trials to reduce the length of time on ventilator-assisted breathing machines; "C" is for choice of analgesia and sedation; "D" is for delirium assessment, prevention and management; "E" is for early mobility and exercise; and "F" is for family engagement and empowerment.

"It's a way to emphasize things we can do in ICUs to reduce long-term consequences for patients," says Eaton. "Since many people describe their stays as 'dreamlike,' with no sense of time or reality, we also try to provide as much natural light as possible during the day, turn off lights at night, open up visiting hours and allow family members to be part of doctors' rounds."

Ongoing, supportive care
Programs like UPMC Mercy's Critical Illness Recovery Center — they number around 20 in the U.S. now — are another piece of post-intensive care syndrome treatment. Patients who have been in ICU at UMPC Mercy for four days or more are personally contacted after discharge and scheduled for an initial three-hour appointment with multiple specialists at the UPMC Mercy recovery center to "tease apart all their issues," Eaton says.

Fran Fabian talks with Dr. Brad Butcher, co-founder of UPMC Mercy's Critical Illness Recovery Center, during a monthly peer support session for former ICU patients. Nate Langer/UPMC

"We are a hands-on, one-stop shop. We reconciliate medications, give immunizations, discuss meal plans, do swallow assessments, give prescriptions for various therapies — whatever is appropriate. Then we forward our entire report to the patient's primary physician," she says. "We also have family members complete questionnaires about caregiver burden, provide counseling and give them strategies to cope with stress."

Adds Butcher: "We recap patients' ICU experience for them and discuss their quality of life and future goals. People experiencing (post-intensive care syndrome) can be a challenging population; many are weak, depressed and have cognitive difficulties. Some are self-motivated to improve their outcomes, but many need a cheerleader. We focus on body, mind and soul."

After the initial screening, patients return for two-hour visits every three months for as long as it takes to manage their recovery process. "Our goal is to support the patient and family in adapting to a new normal after critical illness," says Eaton.

Peer and family support group
In January Mercy's Critical Illness Recovery Center began a monthly peer support program for patients and family members. "It's a venue to discuss common experiences so patients realize they are not on this journey alone," Eaton says. Held in a private conference room and moderated by Butcher and Eaton, the two-hour program begins with a presentation led by a specialist and is followed by group discussion. Recent topics have included compensating for memory loss, home safety and energy conservation, nutritional support and faith-based healing.

"This program is near and dear to my heart; its mission aligns so beautifully with Mercy's core values of dignity and respect, caring and listening, responsibility and integrity, and excellence in innovation," says Eaton. "Our participants come from very different backgrounds, but they bond over common threads of dysfunction they share. It's such a valuable experience to learn that others are struggling with the same things; some group members wind up calling to check on each other."

Tammy Eaton, a nurse practitioner, and Dr. Brad Butcher are the co-founders of UPMC Mercy's Critical Illness Recovery Center. The center takes a holistic approach to treating post-intensive care syndrome. Nate Langer/UPMC

The peer support group is where Fabian connected with Connie Bovier, 59, who wound up in Mercy's ICU in May 2018 with pneumonia, septic shock and acute respiratory distress syndrome. She was in the unit for 22 days, during which time she was on mechanical ventilation and placed in a required paralysis in the prone position to ease her breathing. While in ICU, she also sustained an acute kidney injury, had a pulmonary embolism and suffered from stress-induced cardiomyopathy.

Bovier, a single mother of five who supported her family with a job installing and repairing communications equipment, returned home at the end of June 2018 so weak she could barely button a shirt or lift a frying pan.

Uphill slog
She was one of the first patients to complete a year in the Critical Illness Recovery program.

Maria Shoemaker, a staffer at the ICU recovery center, participates in a group for former ICU patients.
Nate Langer/UPMC

Nowadays, she says she is still adjusting to her new reality and is a regular at the peer support meetings. "I used to feel accomplished when I completed a to-do list," says Bovier. "Now I feel accomplished just making a to-do list."

Though she experiences tremors in her arm, has difficulty finding her words and suffers from depression and anxiety, Bovier has become a dedicated hospital volunteer, addressing meeting mailers for the ICU recovery center and helping to develop its latest initiative — an ICU journal soon to be distributed to family, friends and caregivers of Mercy ICU patients to help them better understand and remember the time they spend in critical care.

With inspirational quotes by Albert Einstein, the Dalai Lama, Ernest Hemingway and more, each patient's journal offers room for visitors to share words of support and recollections of the patient's daily life in the ICU. "Lapses of memory can cause sadness and stress after discharge," says Butcher. "We are hoping this diary will improve these psychological symptoms" common to patients with post-intensive care syndrome.

Though Bovier says she has "lots of memories of the ICU — some of them terrifying," her biggest challenge upon discharge has been "finding a path to move forward."

"I felt as though I were standing at the base of Mount Everest alone, with the wind howling so loud that I couldn't hear myself think," she says. "I knew my best life would be found at the top of the mountain, but I had no idea how to take that first step to climb it."

Now, she says, she is on her way to the summit, thanks to the help of Butcher, whom she calls her "white-coated Sherpa."

"He and his team examined my damaged 'equipment' — my physical and mental state — and determined the best route for me to take to limit obstacles and time spent on plateaus as I progress higher and higher," she says. "I am so fortunate to have Mercy's experts beside me."


Post-intensive care syndrome marked by cognitive and emotional symptoms

The recognition of post-intensive care syndrome is relatively recent, and treatment methods are still evolving, according to Dr. Mark Mikkelsen of the Society of Critical Care Medicine. Mikkelsen co-chaired a task force dedicated to funding support groups for ICU patients and their families nationwide.

"The origins of intensive care units can be traced to the polio epidemic of the 1950s, when ventilatory life support was first developed," he says. "Today there are 5 to 6 million patients in the United States who spend time in an ICU each year. And as mortality rates have improved, there has been a growing recognition that survivors can experience persistent impairments in functional domains of mental and physical health."

In fact, it wasn't until 2010, says Mikkelsen, that the term "post-ICU syndrome" was coined to describe the constellation of cognitive and emotional problems that affect patients, from the executive functioning abilities of processing information and planning to memory loss, PTSD-type anxiety and depression, sleep difficulties and stress.

Even more recently, recognition has grown that post-intensive care syndrome impacts families of patients as well. "There is a ripple effect of strain over time that affects caregivers, who often cope with a loved one's mental challenges as well as the financial blow that occurs as patients become under- or unemployed due to their inability to return to the kind of jobs they once held," he says.



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