Hospitals Take On Post-ICU Syndrome, Helping Patients Recover

Especially at Risk Are Those Who Treated for Sepsis and Who Experience 'ICU Delirium'
Laura Landro (via Wall Street Journal)

Hospitals are doing more to help the growing number of patients who receive treatment for serious illness in the intensive-care unitonly to find their release is the start of a whole new set of problems. With medical advances, even the sickest patients now often survive potentially life-threatening conditions after a stay in intensive care. Many experience aftereffects, not only of the illness but also of the very medical care that may have saved their lives. Doctors call it "post-intensive care syndrome" and say it is becoming more common. In the ICU, patients may be heavily sedated and hooked up to a ventilator, keeping them immobile, breathing and free of pain. But they can develop a temporary brain injury known as "ICU delirium," that is linked to later problems with memory and thinking. As many as 80% of ICU survivors have some form of cognitive or brain dysfunction, according to the Society of Critical Care Medicine, and some never recover. Many experience post-traumatic stress symptoms, depression, fatigue and prolonged muscle weakness. More than five million patients are admitted to an intensive care unit each year for conditions such as respiratory failure and heart failure, and for monitoring after invasive surgery.

The Aftereffects of Critical Illness

Among some five million patients admitted to intensive care units each year, as many as 80% of survivors of critical illness have impaired thinking, judgment or memory months or years later. One in three patients who require a breathing machine show post-traumatic stress symptoms for up to two years. As many as 50% of patients may suffer depression after an ICU stay. ICU-acquired muscle weakness takes up to a year of recovery and occurs in o o o 33% of all patients on ventilators 50% of all patients admitted with severe infection known as sepsis up to 50% of ICU patients who stay for at least one week

Source: Society of Critical Care Medicine; Johns Hopkins University

Especially at risk of developing post-ICU syndrome are patients who have sepsis. Often referred to as "blood poisoning," sepsis is the body's toxic response to infection and the most common life-threatening illness leading to ICU admission world-wide. It can arise from a seemingly benign cut or scrape, or set in as a complication of pneumonia, urinary tract infection or burst appendix. Sepsis can rage through the body and restrict blood flow to vital organs including the brain. It kills 258,000 people a year and leaves about 1.4 million survivors at risk for long-term disability, according to the nonprofit Sepsis Alliance, an advocacy group. It was the most expensive condition treated in U.S. hospitals in 2011, costing more than $20 billion; between 2000 and 2009, the number of hospitalizations with a principal diagnosis of sepsis increased 148%, accounting for 1 out of every 23 patients, according the federal Agency for Healthcare Research and Quality.

Researchers are studying the link between delirium and sepsis as well as other causes, such as powerful sedatives. Septic patients are most likely to develop delirium, and they are at higher risk of developing postICU disabilities than those with other illnesses who develop delirium, research shows. Now, many hospitals are starting to modify standard ICU practices, such as giving patients breaks from constant ventilation, avoiding oversedation, monitoring them closely for signs of delirium and getting them out of bed to walk as soon as feasible. They are adopting protocols to treat sepsis aggressively. Because much ICU care is necessary and many complications unavoidable, critical-care experts also are focusing on post-ICU rehabilitation, including educating patients, families and primary-care doctors about recovering from intensive care. E. Wesley Ely, professor of medicine and critical care at Vanderbilt University, which opened an ICU Recovery Center last year, recommends "hard-core physical and mental rehabilitation" for people recovering from ICU treatment. "Right now they essentially go home and become couch potatoes, their life is terrible, and they often end up back in the hospital," he says. "We need to restructure critical care to handle the needs of ICU survivors." In December 2011, Dana Mirman who had recently moved to Naples, Fla., from New York with her husband and two young sons, spent a week in the hospital, half of it in the intensive care unit, being treated for sepsis. It had developed from an infected bump on her shoulder that she presumed was a bug bite. She wasn't on a breathing machine, but Ms. Mirman says she felt intense pain and head-spinning weightlessness"almost like an out-ofbody experience," she recalls. After being discharged, Ms. Mirman says she struggled with confusion, insomnia, fatigue and swelling from the fluids she had been given to treat the infection, as well as vertigo and intense migraines. And she had trouble finding a doctor who understood or could help.

Her husband, Russell Mirman, found the Sepsis Alliance online. The group's chairman, James O'Brien, vice president of quality and safety at Riverside Methodist Hospital in Columbus, Ohio, assured her this was normal for sepsis survivors and acted as an advisor while she researched treatment options. She began volunteering with the group and joined its board last spring. Ms. Mirman, who turns 39 on Dec. 11 and whose sons are now 8 and 5, says she has been helped by acupuncture, and she found a local primary-care doctor who referred her to specialists. She says she is operating at "about 75% of myself," and "living as actively as possible given some lingering constraints." The Sepsis Alliance is developing handouts on post-sepsis issues for patients to provide to physicians, and it is using Facebook and other social media to help patients connect with each other. "Just knowing that they are not out on an island and others have felt similar experiences is very empowering," Dr. O'Brien says. Theodore Iwashyna, a critical-care physician and researcher at the University of Michigan Health System, is studying survivorship after criticalcare illness. He says post-ICU patients need the same kinds of occupational and physical therapy as heart attack and stroke survivors. "We can do better at figuring out who we can help, so functional and cognitive impairments don't become permanent disabilities," Dr. Iwashyna says. In the past two years, a Critical Care Survivorship pilot program developed at Indiana University, helped more than 100 ICU survivors and their caregivers. Malaz Boustani, chief innovation and implementation officer at Indiana University Health, says more than 88% had evidence of cognitive impairment and 40% suffered from depression. The program enhanced post-ICU care and reduced the number of emergency room visits and hospital readmissions, Dr. Boustani says.

In a Vanderbilt study, patients who survived critical illness and completed 12 weeks of in-home cognitive and physical rehabilitation scored better on tests of their ability to plan and perform tasks with multiple steps, compared with survivors who didn't undergo rehabilitation. Dr. Ely and his team plan to study whether early patient interventions in the ICU, such as memory exercises and puzzles, can help reduce problems later. Millie Camp, 63, was admitted to an ICU at Vanderbilt in March with acute respiratory distress syndrome with suspected sepsis. After more than two weeks immobilized on a ventilator, she could barely sit up in bed or push a button to call a nurse. The ICU Recovery program helped design a rehabilitation program and referred her to the university's Voice Center, where she could overcome aftereffects from the breathing machine and resume singing in a barbershop chorus. She is vigilant about exercise, at first taking classes while toting an oxygen tank. "You have to see each step as an accomplishment and a blessing, and not be burdened about what you can't do," Ms. Camp says.