Millions of patients are admitted to intensive care units (ICUs) each year, one third of whom need a machine to help them breathe (ventilator). These critically ill patients may develop health problems related to their illness, injury, ventilator or other treatments. Such problems cannot be totally prevented and can continue after the patient leaves the hospital. Delirium, acute respiratory distress syndrome, and sepsis increase the chances of these problems occurring. They, too, may not always be prevented.
If you are an ICU patient or family member, this guide helps you understand the health problems known as post-intensive care syndrome, or PICS, so you know what to look for when you return home. It also includes tips on how to minimize PICS. Many people develop PICS, and help is available. You will have the best chance of recovery if you explain your health problems to your primary care doctor, who can refer you to the specialists you need.
What Is PICS?
Post-intensive care syndrome, or PICS, is made up of health problems that remain after critical illness. They are present when the patient is in the ICU and may persist after the patient returns home. These problems can involve the patient’s body, thoughts, feelings, or mind and may affect the family. PICS may show up as an easily noticed drawn-out muscle weakness, known as ICU-acquired weakness; as problems with thinking and judgment, called cognitive (brain) dysfunction; and as other mental health problems.
ICU-acquired weakness (ICUAW) is muscle weakness that develops during an ICU stay. This is a common problem of being critically ill and occurs in:
- 33% of all patients on ventilators
- 50% of all patients admitted with severe infection, which is known as sepsis
- Up to 50% of patients who stay in the ICU for at least one week
Patients who develop ICUAW may take more than a year to recover fully. ICUAW makes the activities of daily living difficult, including grooming, dressing, feeding, bathing and walking. ICUAW may greatly delay the patient from doing activities in the way he or she used to do them.
Cognitive or brain dysfunction
This refers to problems connected with remembering, paying attention, solving problems, and organizing and working on complex tasks. After leaving the ICU, 30% to 80% of patients may have these kinds of problems. Some people improve during the first year after discharge from the hospital; other people may never fully recover.
Cognitive dysfunction may affect whether the patient can return to work, balance a checkbook, or perform other tasks that involve organization and concentration.
Other mental health problems
Critically ill patients may develop problems with falling or staying asleep. They may have nightmares and unwanted memories. Reminders of their illness may produce intense feelings or strong, clear images in their mind. Their reactions to these feelings may be physical or emotional.
Patients may also feel depressed and anxious and may have symptoms of posttraumatic stress disorder (PTSD). These include having nightmares and unwanted memories, feeling “keyed up,” and wanting to avoid thinking or talking about their stay in the ICU.
How Does PICS Affect Recovery?
Up to 50% of patients may return to work within the first year, but some may not be able to return to the jobs they had before their illness. Patients may need help with activities after leaving the hospital.
What Can Family Do to Minimize PICS?
If you are a family member, you may be able to minimize PICS by helping your critically ill family member stay “oriented”:
- Talk about familiar things, people and events.
- Talk about the day, date and time.
- Bring in favorite pictures and items from home.
- Read aloud at the bedside.
You can also keep a diary or journal and later review it with the care team and your family member. This may help your family member understand what happened, clear up some memories, and reduce stress.
Lastly, you can ask the care team to teach you how to help with your family member’s bedside exercises. Exercises prevent weakness by keeping the joints and muscles active. Patients should move their body as soon as they can and work with physical therapists, even while using a ventilator. Moving is also good for the brain.
How Does PICS Affect Family?
Critical illness is a family crisis. Feeling worried and confused can cause family members to stop tending to their own health. The care team may ask the family to make decisions about important, sometimes overwhelming matters. Because of this, 30% of family members may experience their own mental health problems, such as depression, anxiety and PTSD.
How Can Family Lower Their Chances of Developing PICS?
First and foremost, if you are a family member, take care of yourself. This cannot be stressed enough. Meeting your critically ill family member’s needs is a major part of care, but your needs are just as important. If you are well, you have the physical and emotional strength to support your family member and feel good about it. Eat well, get as much rest as possible, exercise, and seek support. The hospital has social workers, case managers, and pastoral caregivers who can help.
Take time to understand your family member’s illness and treatment options. Having this information will help you make decisions, feel confident about the decisions you make, and reduce stress. Ask questions, ask to meet with the care team, and keep a journal. Review the journal with a member of the care team whom you trust to make sense of what has happened and how you are responding to it. These actions can help you and the care team recognize and respect your family member’s wishes, values, and preferences as much as possible.
Participating in patient care is another way to support your family member and reduce stress. The bedside staff can suggest activities for those who want to be involved.
After Leaving the ICU
If you are an ICU patient, the care team may diagnose you with PICS or determine you are at risk for developing it. They may refer you to other caregivers for support services after you leave the ICU. If not, these are possible warning signs:
- Muscle weakness or problems with balance
- Problems with thinking and memory
- Severe anxiety
If you notice any of these problems, please ask your primary care doctor or caregiver to refer you to one of these specialists:
Occupational therapist: A caregiver who helps the patient relearn life skills, such as the activities of daily living and the use of memory (for example, grooming, feeding, dressing, balancing a checkbook).
Physiatrist: A medical doctor who is specially trained to diagnose and treat injuries to the muscles, bones, tissues and nervous system. The physiatrist can prescribe medication. He or she teaches patients exercises to improve what they can do and gives patients devices to help them adapt to what they cannot do.
Physical therapist: A caregiver who helps restore the patient’s ability to function and be independent after injuries to the muscles, bones, tissues and nervous system.
Psychiatrist: A medical doctor who is specially trained to diagnose and treat mental health problems. The psychiatrist can prescribe medication.
Psychologist: An advanced degree professional who can diagnose and treat problems with thoughts, emotions and coping skills. The psychologist tests and assesses behavior and mental health.
Speech therapist: A caregiver who helps the patient with problems related to memory, attention and swallowing. The speech therapist also helps the patient learn to speak again, if necessary.
These websites have all kinds of information about the critical care setting, the caregivers involved, and what options you have:
ICU Delirium Website: This website, created by Vanderbilt University Medical Center, helps you understand delirium, a state of confusion that comes on very fast and can be caused by a critical illness or the critical care setting.
Acute Respiratory Distress Syndrome
ARDS Network Website: This website, created by the National Heart, Lung and Blood Institute, helps you understand acute respiratory distress syndrome, a problem with the lungs that leads to low oxygen levels in the blood. Acute respiratory distress syndrome is a common reason why patients are in the ICU.
- Sepsis Alliance Website: This website, created by a charitable organization, helps you understand sepsis, the body’s toxic response to infection. Sepsis is a common reason why patients are in the ICU.
- Surviving Sepsis Campaign Website: This website, created by the Society of Critical Care Medicine, is for critical care doctors, nurses and caregivers. It recommends how best to diagnose and treat sepsis.
Helpful Video Links
The Society of Critical Care Medicine has developed several videos featuring interviews with caregivers and ICU survivors. These videos also are available at www.youtube.com/SCCM500:
- A Patient’s Perspective on Post-intensive Care Syndrome Video: This YouTube video, created by Johns Hopkins University, helps you understand how patients regain health after an ICU stay. The patient in the video is a thirty-nine-year-old man. He recalls his first year after intensive care, including his delayed return to work. He also describes health challenges that some patients face with their body, thoughts, feelings or mind during recovery after the ICU. These health issues, known as post-intensive care syndrome, or PICS, arise during the patients’ ICU stay. Being more informed about post-ICU health issues can help you talk to your doctor and nurse about them.
- Delirium in the ICU Video: This YouTube video, created by Johns Hopkins University, helps you understand the confused thinking, or delirium, that affects many patients during their stay in an ICU. The patient in the video is a sixty-year-old woman who was admitted to the hospital with kidney problems. After her admission, she developed severe infection and breathing problems. These problems required her to be in the ICU for eleven days on a machine that helped her breathe (mechanical ventilator). After one month in the hospital, she returned home. The patient recalls her delirium in the ICU and its effect on her. She describes the confusing, sometimes scary misperceptions and hallucinations that commonly occur. She also stresses the need to acknowledge these experiences, even though they were not real-life events. Finally, she suggests ways in which the family can help a patient during and after his or her delirium.
After watching these videos, you may have questions or concerns about PICS and delirium. If so, talk to your doctor, nurse or care team. They know you best and can help you through these topics.
Publication Date: 2013
Page Created By: Judy E. Davidson, RN, CNS, DNP, FCCM; Ramona O. Hopkins, PhD; Deborah Louis, RN, MSN; Theodore J. Iwashyna, MD, PhD