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Post Intensive Care Syndrome. What is it? How can you avoid it?

By Diane Berardi,
Eldercare Expert and  Parents Are Hard To Raise Talk Show Host

Millions of patients are admitted to intensive care units (ICUs) each year, one third of who will need a machine to help them breathe (ventilator). If your mom or dad is ever among them, there is a good chance they may develop health problems related to their illness, injury or the life-saving measures used in their treatment and care.

Unfortunately, medical science has not yet found a way to totally eliminate the chance for complications such as delirium, acute respiratory distress syndrome, and sepsis. So, problems can and do arise and can continue even after mom or dad leaves the hospital.

If you’re aging parent ever has to be admitted to the hospital for a critical illness, there are steps that you can take to help lessen the risks for complications.

I’ve prepared this short guide to help you understand the health problem, now known as Post-Intensive Care Syndrome, or PICS, so you know what to look for when your parent returns home.

First, let’s define PICS:

Post-intensive care syndrome, or PICS, is made up of a number of varied health problems that often remain long after the critical illness has resolved.

Most times these health problems, which can involve the patient’s body, thoughts, feelings, or mind, begin to appear when a critically ill person is being cared for in the hospital’s intensive Care Unit. Often, these types of health problems may persist, for years, after your aging parent returns home and may also affect you and other members of the family.

PICS can show up as simply as a general muscle weakness, known as ICU-acquired weakness, or as problems with thinking and judgment, called cognitive (brain) dysfunction, or as other mental health problems.

ICU-acquired weakness

According to the Society of Critical Care Medicine, 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

If your aging parent develops ICU-acquired weakness, just know that it may take more than a year to recover fully.

As a caregiver, you need to know that ICUAW makes the activities of daily living difficult, including grooming, dressing, feeding, bathing and walking. This means that the time it will take for mom or dad’s ability, to take care of themselves in the way they used to, may be delayed or may never fully return.

Cognitive or brain dysfunction

People who experience cognitive or brain dysfunction, as a result of being critically ill, may have difficulty remembering, paying attention, solving problems, and organizing and working on complex tasks.

This condition is more common than you might think. 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 your parent can return to living independently without some type of assistance. They may no longer be able to balance a checkbook, or perform other tasks that involve organization and concentration.

Other mental health problems

If your parent is recovering from a critical illness, they 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.

They may also feel depressed and anxious and may have symptoms of posttraumatic stress disorder (PTSD). These include having nightmares and unwanted memories, feeling anxious and wanting to avoid thinking or talking about their stay in the hospital.

How Does PICS Affect Recovery?

Up to 50% of patients may return to life as they knew it within the first year, but some may not be able to have the level of independence they had before their illness. Regardless of how “healthy” or independent they were before the illness, chances are good that your aging parents are going to need help with activities after leaving the hospital.

What Can Family Do to Minimize PICS?

As the child of an aging parent, you may be able to minimize PICS by helping your mom or dad stay “oriented” during the time they are in the ICU. As a gerontologist, I advise my clients to do the following whenever their parent enters the hospital, and especially if they must be in the ICU for any length of time:

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 parents and other family members. This may help your mom and dad understand what happened, clear up some memories, and reduce stress.

You can ask the care team to teach you how to help with your parent’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.

Ask The Right Questions

Knowledge is a great weapon in the battle against stress. And the best way to gain the kind of knowledge that opens the door to good understanding is to ask the right kind of questions. To get you started, I’ve put together a list of questions I have my clients ask whenever they must deal with the healthcare system. There are certainly more than the ones I have listed, and you’ll likely think of them once you begin asking, but these will get you started:

  • Will mom/dad get through this?
    What are his/her chances of a full and complete recovery?
    What should I expect as he/she progresses?
    How long will he/she be in the ICU?
    Is he/she in pain?
    When will he/she be able to breathe on her own?
    What plans should be followed?
    Is he/she aware of what’s happening?
    Will he/she be able to return to normal activities and continue living on his/her own?
    What do I need to know to properly plan care for her when he/she gets home?
    What are the treatment options?
    Is there anything else I can do?

PICS doesn’t only Affect the patient, it affects the entire 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. As the child of an aging parent you need to be mindful of this possibility and take steps to deal with it.

How Children of Aging Parents Lower Their Chances of Developing PICS?

First and foremost, take care of yourself. I can’t stress this enough. Meeting your critically ill parent’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 mom and dad and feel good about it. But you have to remain well in order to do that. So, 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. You can also seek the advice of a gerontologist, like myself, who has the knowledge, experience and professional contacts and resources to help guide you through the process. You don’t have to go it alone. There are plenty of people trained and available to help.

Take time to understand the scope and extent of your parent’s illness and treatment options. Having this information will help you make confident, informed decisions, 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 parent’s wishes, values, and preferences as much as possible.
Participating in your mom or dad’s care is another way to support your other family members and reduce stress. The bedside staff can always suggest activities for those who want to be involved with their parent’s care. And, trust me… in today’s overburdened hospital system, your involvement will be greatly appreciated and will increase the health and safety benefits for your parent.

After Leaving the ICU

If your mom or dad ever has to be cared for in the ICU understand that they are at risk of developing PICS.

Here are some possible warning signs:
Muscle weakness or problems with balance
Problems with thinking and memory
Severe anxiety
Depression
Nightmares

If you notice any of these problems, ask your primary care doctor or caregiver to refer you to one of these specialists:

Occupational therapist: can help your mom or dad relearn life skills, such as the activities of daily living and the use of memory (for example, grooming, eating, dressing, balancing a checkbook).

Physical therapist: can help restore your aging parent’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: can help the patient with problems related to memory, attention and swallowing. The speech therapist also helps the patient learn to speak again, if necessary.

Gerontologist: are expert health care professionals who specialize in the field of aging. They provide their services to people in universities, hospitals, nursing homes, senior citizen centers, and the community. Gerontologists are responsible for educating other medical and healthcare professionals and practitioners about the process of aging. I do this by giving informative presentations, publishing books and articles about aging and health, and producing relevant videos, television and radio programs such as Parents Are Hard To Raise.

Gerontology is a multi-disciplinary field, including aspects of medicine, biology, psychology and sociology and other sciences. Some gerontologists are researchers, helping to interpret new findings in microbiology and biochemistry that might unlock the physiological secrets of the aging process. Others are administrators and policy-makers at the community or government level.

Those in private practice, such as myself, work directly with elders and their families to guide them through the aging and healthcare system, so our elders can live independently, as thriving members of the community for as long as they wish.

Improving quality of life for seniors, individually or collectively, is the common goal of all gerontologists.

Helpful Websites

ICU

These websites have all kinds of information about the critical care setting, the caregivers involved, and what options you have:

Delirium

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

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 other members of the multiprofessional care teams. 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 39-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 stay. 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 60-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 11 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 conditions.