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Post Intensive Care Syndrome. What exactly is this?

Post Intensive Care Syndrome (or PICS) is the name given to symptoms that appear as a result of a stay in an ICU. It includes psychological, cognitive and physical problems that can create an aftermath of high impact and long-lasting effects.

So, you’re ready to go. After weeks of lying in a critical condition in the ICU, you can go home again. But as the days and weeks pass at home, you keep noticing different symptoms – some you understand and some you don’t.

That your muscle tone and general fitness is no longer what it was before you were in ICU, that you get. But some things you were not prepared for. Feelings of anxiety, noises in your head that keep you awake at night, problems with your memory, and finding it difficult to keep a conversation going. It feels like you will never manage to get back to the life you had previously. You start to doubt yourself. Why on earth is all this happening?

“Admission to Intensive Care Unit is a disruptive event. You are seriously ill and are hooked up to a monitor and breathing equipment. This often has major consequences for people’s ability to function afterwards” explains Diederik Gommers, ICU doctor and chair of the Dutch Intensive Care Association (Nederlandse Vereniging Intensive Care). “It takes a long time before you can get back to work, if you are ever able to. As well as that, you may have problems with everyday things, like washing yourself or going shopping”, Gommers explains to the organization for Family and Patient Centered Intensive Care.

Over the years, ICU treatments have steadily improved. As have the odds of surviving. The result of the treatment is therefore increasingly leading to a combination of different symptoms. Since 2010 this has been officially recognized, and a name was given to this group of symptoms. In that year, a group of people involved in Intensive Care medicine got together to improve the long-term results for patients and their families after discharge from ICU. This led to two new terms being coined: PICS for the patient and PICS-F for members of their family.

Having this diagnosis helps to clarify things, confirms former ICU patient Daphne Bolman. After a stomach operation with complications she spent two months in ICU in 2013, of which three weeks were in a coma. In a television program on Op1, Daphne talked about her experience and the effect of PICS on her life. “It literally feels as if I lost time. I knew absolutely nothing about those 3 weeks; did not know what the weather was, which songs were playing on TV or what happened to me.” Her husband and sister kept a journal from the time she was moved to ICU. This meant that Daphne was able to fill in the missing memories and reconstruct that period.

It literally feels as if I lost time. I knew absolutely nothing about those 3 weeks; did not know what the weather was, which songs were playing on TV or what happened to me.

Preventing PICS is difficult, because there are multiple factors that influence how it is caused. But we can reduce the symptoms. Daphne is now an ambassador for more awareness and information about PICS. Her story, together with that of 22 other former ICU patients, has been included in the book “Impact of Intensive Care” (in Dutch), published by the patient organizations IC Connect and Family and Patient Centered Intensive Care. These organizations fight on behalf of (former) ICU patients and their families, and provide additional information before, during and after the stay in ICU. They also organize back-to-ICU days and promote contact with fellow sufferers, so that they can share their experiences and find support on the road to recovery.