When a critical illness or accident unexpectedly lands someone in an intensive care unit (ICU), family members are naturally upset and worried about their loved one. An ICU stay is a challenging and stressful time for patients and their families. Witnessing a loved one’s critical illness can take a mental toll on family members, sometimes leading to a condition called postintensive care syndrome-family, or PICS-F.
It’s hardly a surprise that families might show signs of PICS-F. After all, you’re suddenly thrust into an overwhelming world of the unknown. Will your loved one survive the ordeal? What will his or her quality of life be like after discharge? What are all those alarms and monitors that keep going off and beeping? Add to that the search for answers about your loved one’s condition and trying to make sense of what doctors, nurses, specialists, attendants, and an array of other hospital staff are telling you.
Official recognition of PICS-F
In 2012, PICS-F was formally recognized by the Society of Critical Care Medicine (SCCM), a nonprofit medical association. PICS-F is similar to postintensive care syndrome (PICS), a set of physical, cognitive, and psychological problems that can affect ICU patients. Some symptoms of PICS overlap those of PICS-F.
PICS-F can manifest upon a loved one’s admittance to an ICU or after the patient is discharged or dies. Symptoms include:
- Post-traumatic stress disorder (PTSD)
- Insomnia or nightmares
- Unusual fatigue
- Emotional “triggers” associated with hospitalization that could lead to panic attacks
- Memory loss or trouble concentrating
- Strained family dynamics and disrupted relationships
PICS-F is diagnosed if symptoms persist for a month or longer. Depression, anxiety, and PTSD are the most common symptoms, according to a review in the April 2019 issue of the American Journal of Geriatric Psychiatry. Up to about 65 percent of family caregivers have reported impaired sleep for at least two months after a relative was in the ICU, according to several other studies.
Spouses or other family members may also face significant caregiving duties upon a patient’s discharge, especially when the patient is an older adult. Just slightly more than half of adults ages 70 and older regain their pre-ICU function within six months, according to a study published in 2016 in the American Journal of Respiratory Critical Care Medicine. Family caregivers may be ill-prepared to take on the complex needs of their loved one after discharge since hospital staff had previously been managing the patient.
Risk factors for PICS-F
You’re more likely to develop PICS-F if you:
- Are female
- Are younger than 65 years
- Are caring for a spouse
- Are in a decision-making role
- Are caring for an ICU survivor for more than 100 hours a month
- Have restricted access to the patient because of limited visiting hours
- Have poor communication with ICU doctors and hospital staff
- Perceive that the patient is near death
- Lack social or professional support
- Have a preexisting mental or physical illness
- Have a family history of mental illness
- Did not attend college
In 2017, the SCCM issued guidelines for family-centered care in the ICU, which were published in the journal Critical Care Medicine. The guidelines outline several interventions that hospitals could implement to deliver family-centered care in the ICU, including an “open” ICU that supports the presence of family members; regular communication with the family, such as daily meetings; and an ICU diary in which family and providers can document the patient’s stay.
While it’s up to hospitals to implement the SCCM recommendations, there are several things you can do to help prevent PICS-F:
- Contribute to bedside care, such as applying lip balm and lotion, filing nails, giving massages, and assisting with range-of-motion exercises. Such activities can increase your contact with the patient and provide you with a sense of usefulness while helping you adjust to your role as caregiver.
- Read a newspaper or book to your loved one even if he or she isn’t awake.
- Meet regularly with the doctor to get information on prognosis and potential physical and emotional effects so you know what to expect.
- Take care of yourself. Try to take brief breaks to exercise, such as going for a walk on hospital grounds. Get regular meals and try to get adequate sleep.
If you’re struggling with symptoms of PICS-F, talk with your doctor for advice. You can also ask for a referral to a family support group where you can learn how others are coping with the healing process.
A small number of critical care providers have specialized ICU survival clinics, where patients and their families can go for help in overcoming PICS and PICS-F. The clinics are designed to help improve patients’ and families’ quality of life and ease caregiver burdens. However, evidence that demonstrates their long-term effectiveness is lacking. You can find a list of clinics on the Society of Critical Care Medicine’s website for patients and families, MyICUCare.org. You can also learn more about PICS-F on the site as well as find support groups where you can connect with other patients and families experiencing PICS and PICS-F.
This article first appeared in UC Berkeley Health After 50.
Also see How to Prevent Caregiver Burnout.