Last year, my husband experienced a traumatic brain tumor diagnosis which required six surgeries and a two month stay in the hospital. Over half of that time was spent in the intensive care unit. To say that I gained a new appreciation for modern medicine is an understatement. We were blessed to have some great surgeons, doctors and nurses. However, the event in and of itself was extremely intense and has since left a lasting impression on us in the form of something called post-intensive care syndrome, or PICS, and post-intensive care syndrome for families, or PICS-F.
Modern critical care medicine has the ability to bring people back from the brink of death and to keep people alive for much longer than in the past. It has now been shown that these survivors can develop myriad mental and/or physical disabilities after treatment in the intensive care unit. In fact, up to 50% of patients who stay in the ICU for at least one week are susceptible to PICS. Research is now shedding light as to the severity and the need for education and post-care for patients and families as they deal with the aftermath of this.
Components of PICS are multi-faceted. There are quite a few symptoms of PICS and they are varied among many different medical issues. It is best to know that if you or a loved one is in the hospital for a prolonged period of time, that PICS may become an issue and it is important to talk to the health care providers and the social workers provided by the hospital so as to be guided into where and how to get help.
What does this look like or how does it manifest? Here are a few of the components:
Cognitive impairment is an impairment in thinking and judgment. Studies show that this can occur in 25-75% of ICU survivors.
Mental health problems: In the form of sleep deprivation, depression, anxiety and post-traumatic stress disorder.
Neuromuscular weakness: Weakness in limbs, recurrent falls or poor mobility.
With cognitive impairment, some patients improve during the first year after leaving the hospital, some may never fully recover. With PICS, up to 50% of patients may return back to work or their “normal” lives within the first year but some may never. Some may never return back to the activities they enjoyed and they may need help with every day activities.
What can be done to help minimize PICS? In the hospital, help your critically ill loved one stay “oriented.” This looks like talking about things that are familiar to them (things, people and events), talk to them about what day it is and what time it is, bring in stuff from home that they love (pictures, blanket, etc.), and read to them. It has also been found to be helpful to keep a journal about what happens day to day for them. This can help after to clear up any foggy memories and can help reduce the stress of the event.
It has been shown that up to 30% of family members of critically ill patients can be affected in a similar manner while their person is in the ICU and these effects may last after they leave the hospital. This manifests like anxiety, depression, sleep deprivation, complicated grief and PTSD. However, usually these issues do not root from physical causes. Research shows that they can stem from issues or poor communication with and between hospital staff, having to deal with being in a decision-making role, having a lower education level and if they have had a loved one who has died or who is close to death.
To help family, first, take care of yourself. Eat well, exercise, try to sleep, keep a journal, ask questions and develop open lines of communication with the hospital staff. It’s easier said than done, I get that, but it’s crucial to your health and the overall experience for yourself and your loved ones. I couldn’t have survived without my support network, so make sure you tap into yours as well. Allow people to help you. You will not regret it. Best of luck out there.