Chronically critically ill - interesting hot topics

From Philadelphia Inquirer

2013: A new frontier in ICU research: Postintensive care syndrome

...Doctors used to think patients returned to normal after the delusions and hallucinations of ICU delirium stopped. They're learning instead that some leave the hospital with terrifying false memories, often of being assaulted or imprisoned. The horrible visions help explain why a recent Johns Hopkins study found that one in four patients had post-traumatic stress symptoms two years after going home.

Now that ICU doctors have gotten better at saving patients' lives, they are asking what comes next. The answers are disturbing.

Researchers are finding that months - even years - after patients leave the hospital, many struggle with physical weakness, thinking problems, anxiety, depression, and PTSD. Even younger patients often cannot return to work.

Last year, the Society of Critical Care Medicine gave the constellation of problems a name - postintensive care syndrome - and ICU doctors around the country are revamping care in hopes that the lives they save will be less troubled.

Many of the changes - less sedation, more exercise, 24-hour visitation, dark rooms at night to encourage more normal sleep - are meant to reduce delirium. About 75 percent of ICU patients develop delirium, which is associated with poorer survival and more long-term problems....

April 20, 2018: Words that heal: ICU journals at Penn help patients and staff

..... The 53-year-old Chester County man, already depleted by cancer treatments and a December bout with pneumonia, was unconscious and hooked to a breathing machine. His family was told he might not make it through the night.

They also were given a small spiral notebook labeled ICU Healing Journal. The family could fill it with words that could help hospital staff understand who Nappi is. Doctors, nurses, and therapists would add entries offering support and explaining what Nappi was going through. The journal could help him adjust to life after the ICU - if he survived....

...The power of human connection

After years of planning, Penn Presbyterian began offering the journals in January to help prevent post-intensive care syndrome, or PICS, a set of physical and emotional problems gaining attention as more people survive an ICU stay but struggle afterward.

The journals have proven powerful for patients, as well as families and staff, said Mark Mikkelsen, a critical care doctor, who, along with Julie Rogan, an ICU clinical nurse specialist, helped start the project...