Every year, about 6 million people are admitted to intensive care units with a life-threatening illness. As medical technology advances, more people survive conditions that once would have been fatal. However, about half of these ICU survivors develop some form of cognitive, psychosocial and physical deficits in a condition known as post-intensive care syndrome, or PICS.
Common symptoms of PICS are:
— Nerve pain and/or muscle weakness, generally affecting both sides of the body and primarily affecting proximal arm and leg muscles as well as respiratory muscles. Recovery from pain and weakness usually occurs within weeks or months, but it can persist for up to two years. Older patients and those on prolonged mechanical ventilator support are considered most at risk.
— Cognitive decline/impairments. These often occur abruptly, rather than gradually, within a very brief time period, improving only slightly over time. It involves a wide range of domains, such as problems with thinking and memory; an inability to concentrate; trouble managing executive, language or visuospatial function; or a combination of all these symptoms. Elderly patients and those with dementia are considered at-risk, as well as patients with preexisting cognitive deficits. Patients who experience severe infection and those with pneumonia requiring mechanical ventilator support are also at risk.
— Psychiatric disorders. The previous ailments described can be pathways to the progression of anxiety, depression and post-traumatic stress disorder, as well as more existential issues related to grieving the loss of oneself and living in the present with all of the new symptoms. ICU survivors may experience sleep disturbances or nightmares, avoid stimuli or re-experience a distressing event. The symptoms can persist for years. Patients who experience severe infection, those with pneumonia requiring mechanical ventilator support and those with preexisting anxiety, depression and PTSD are at risk. Females under 50 with a history of alcohol and drug abuse, a preexisting disability and unemployment are also at risk.
[See: 14 Things You Didn’t Know About Nurses.]
The Aftermath: How Does Post-ICU Syndrome Affect Families?
Just mention the word ICU to my friend, and she’ll immediately launch into a story about the nightmare she lived through when her father was a cardiac patient in the ICU 30 years ago. I once said to her, “You know, I think you have PTSD,” and neither of us laughed. This is a serious problem, and it’s essential that we address it as such. We must consider what happens to the family caregiver when a loved one is in the ICU, particularly for an extended period of time. Unfortunately, having a loved one hospitalized in the ICU unit tends to be as emotionally and physically draining today as it was 30 years ago, but there are support services and resources available to help families recover from this challenging time.
At Montefiore’s Caregiver Support Center, which opened in 2011, we have learned about the devastating effects that families experience during their loved one’s ICU hospitalization and after. The center is designed solely to support the family/friend caregiver, and having been there for people in their most intense hours of need, we have learned so much. Watching your loved one, whether it’s your spouse, parent or child, critically ill in the ICU takes an emotional and physical toll, and the ripple effect cannot be underestimated.
We know that the family is the unit of care. We know that upon discharge from the ICU, the patient will require an extended period of time to recover, and returning to their health as it was before their illness may never be achieved. The same is true for the family. While family caregivers are initially relieved and so glad that their loved one is “out of the woods “and leaving the ICU, a new world is just beginning, and the adjustments can be difficult to navigate, let alone recognize.
The person who was in the ICU is no longer “just” the spouse, parent or child — he or she is now a person with multiple needs and, in fact, still a patient. The caregiver is now thrust into a role that he or she is not necessarily equipped to deal with, especially without the support and all-encompassing care of the ICU staff. It’s a caregiver discharge as well as a patient discharge, and often, we forget about that person or people.
After discharge from the ICU is when caregivers frequently realize just how exhausted they are: physically and emotionally, and perhaps there’s a financial toll, as well. Caregivers often take off from work for extended periods of time when their loved one is critically ill, and the family’s financial situation may have taken a hit.
In the throes of a medical crisis, the focus is intently on the patient, as is necessary, while the needs of the caregiver are often ignored. This can lead to a set of psychological symptoms that family members frequently experience but don’t have a means to express. This condition is known as post-intensive care syndrome — family, or PICS-F.
Family caregivers may experience extreme anxiety about leaving their loved one alone or even being separated to go to the grocery store or back to work. The intensity of the ICU experience can also increase the intensity of attachment between the family members and the patient. It’s common for the family caregiver to experience anxiety about the illness reoccurring, and he or she may now suffer from anxiety, depression and PTSD themselves. Common symptoms include trouble sleeping, poor eating habits, ignoring self-care, missing doctors’ appointments, social isolation and feelings of pervasive loneliness.
[See: When Health Treatments Go From Hospital to DIY.]
What Resources Should the Family/Caregivers Seek?
We cannot emphasize enough, first and foremost, that the family/caregivers need to take care of themselves before taking care of the patient. A rule of thumb is that for a young patient, each day in ICU requires one week of recovery; for older patients, this can be extended to more than two weeks of recovery for each day in the ICU. Recovering from a critical illness is a long journey for both the patient and the family; thus, it’s critical that the family and caregivers are aware of PICS and management strategies.
Studies have shown that it’s helpful to keep a diary. Take the time to understand your loved one’s illness; ongoing medical, physical and mental needs; and treatment strategies and options. Document what works and what doesn’t. Ask doctors questions, and ask them to help you set realistic expectations — a benchmark needs to be set for progress and timetables. Having this information will help you make decisions and feel confident about the decisions you make, plus reduce stress. These actions will keep your thoughts in line, help you set a goal and allow the care team to understand and respect your family member’s values and preferences as much as possible.
Besides the primary care physician and specialists who treat organ systems, here is a group of specialists you should consult if your loved ones develop PICS.
[See: 14 Ways Caregivers Can Care for Themselves.]
— Physiatrist: A medical doctor who maximizes what a patient can do and supports the patient in adjusting to what he or she cannot do. The goal is to achieve the anticipated level of independence.
— Psychiatrist: A medical doctor who diagnoses and treats mental health problems. Medication may be necessary to treat anxiety, depression and PTSD.
— Psychologist: A professional who diagnoses and treats problems involving thoughts, emotions and coping skills. The psychologist tests and assesses behavior and mental health.
— Occupational therapist: A caregiver who helps the patient relearn activities of daily living, such as feeding, dressing, grooming and balancing a checkbook.
— Physical therapist: A caregiver who helps to restore a patient’s ability to function and be independent after injuries to the muscles, bones, tissues and nervous system.
— Speech therapist: A caregiver who helps people with problems related to memory, attention and swallowing.
While the ICU experience can have many lasting effects, positive and negative, on patients and caregivers alike, there are people and resources available to support all of them on their road to recovery.
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Surviving Critical Illness: What Is Post-ICU Syndrome and How Does it Affect Patients and Families? originally appeared on usnews.com
