About PostICU - Post-Intensive Care Syndrome
We stand as the only patient-built advocacy and information 501(c)3 nonprofit corporation. As we move through uncharted waters as nonmedical professionals in a technical world, we hope to grow our ranks, so that we become positioned to advocate on behalf of future ICU patients. PostICU is a division of North American Help Services Alliance, Inc.
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OUR PRIMARY MISSIONS IS TO:
Provide resources to the public to educate them about PICS and PICS-F; and,
Advocate for testing, staging, and treatment of all former ICU patients that are in danger of experiencing PICS.
As we grow our ranks, we carry more clout, allowing us as a group to make recommendations to the critical care medical community and insurance companies about ways to improve the likely outcome for most patients who spend time in an ICU.
One would be hard-pressed to find medical professionals that would contradict our mission with regards to our core recommendations for changes to the way ICU patients are treated.
Of course, our recommendations are tempered by our appreciation of the fact that we are not medical professionals. That is why our core recommendations stretch no further than what commonsense dictates.
POSTICU'S COMMONSENSE RECOMMENDATIONS TO THE CRITICAL CARE COMMUNITY
ICU patients, their caregivers, and/or family members, as part of their discharge hospital, should be briefed about PICS, PICS-F and PICS symptoms to be aware of. Because it Is more likely than not that they will suffer from one or more of these symptoms.
A discharging hospital should assign to all former ICU patients, a PICS specialist, well-versed in PICS medical care, with whom an appointment is scheduled as part of the discharge process.
At the follow-up appointment, the PICS Specialists should evaluate former ICU patients to determine whether they are experiencing PICS related symptoms, and if so to what degree.
PICS diagnoses should be staged, to assist in determining the severity of former ICU patients' conditions, and to help with the establishment of treatment protocols.
For more complex PICS staging, PICS Specialists should convene a multi-disciplinary team of medical professionals, based upon the former ICU patients' needs. The PICS Specialist should lead the group and follow-up with patients' teams and patients, to ensure that recommended testing and treatment occurs.
Health Insurance carriers, Medicaid, and Medicare should accept responsibility for payment of all testing and medical care that is recommended by PICS Specialists.
POSTICU COMMONSENSE RECOMMENDATIONS TO THE CRITICAL CARE COMMUNITY
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 post-traumatic 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.
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
HOW DOES PICS AFFECT PEOPLE'S LIVES?
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 bodies 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 inpatient 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.
The Society of Critical Care Medicine ("SCCM") features a tremendous amount of information about PICS on its website. They also have produced a series of articles designed to explain PICS to lay-people. SCCM defines PICS as follows: