After 20 years and hundreds of studies, the critical care community has become aware of how devastating and long-lasting the post-discharge consequences of critical illness can be. The term post-intensive care syndrome (PICS) is now used to describe the new or worsening impairments in physical, cognitive and mental health status arising and persisting after hospitalization for critical illness.(1) These impairments can last for months to years and can affect families as well as patients.
Key aspects of PICS in patients are summarized as follows:(1-4)
• 10–75% of patients have difficulty with activities of daily living (ADLs) one year later.
• 25–60% of patients on mechanical ventilation for more than four to seven days develop intensive care unit (ICU)-acquired weakness (ICUAW).
• 50–75% of patients with sepsis develop ICUAW.
• 85–95% of those who develop ICUAW still have abnormalities two to five years later.
• 30–80% of patients have cognitive impairment one year later.
• 25% of patients with adult respiratory distress syndrome (ARDS) still have cognitive impairment six years later.
• Patients older than 65 years with severe sepsis can still have cognitive impairment eight years later.
• 10–50% of patients have symptoms of depression, anxiety and/or sleep disturbance that last for months to years.
• 10–50% of patients have significant symptoms of posttraumatic distress disorder (PTSD) that can still be present eight years later.
• 50% of patients require caregiver assistance one year later, varying from help with ADLs to full care.
• Less than 10% of patients on mechanical ventilation for more than four days are alive and completely independent one year later.
• 50% of patients with ARDS have not returned to work one year later.
• 10% of patients go bankrupt.
Key aspects of PICS in families include the following:(1-4)
• 20–75% of patient family members have anxiety.
• 8–42% of patient family members have depression.
• 33% of patient family members are taking medication for anxiety or depression at patient discharge.
• 8–33% of patient family members have symptoms of PTSD.
• If the patient was a child or if the patient died, up to 50% of patient family members have symptoms of PTSD.
• These problems can last for years.
• Prolonged or complicated grief may occur.
• Exacerbation of chronic health problems is possible.
• Challenges to family relationships and financial security are common.
Critical care practitioners have always known that, as our ability to save lives improves, we send more and more severely ill and injured patients back to their families and communities. This means that many ICU survivors have suffered more during their ICU stays. We knew that their road to recovery could be long and hard, but we found the extent and severity of what the PICS research revealed startling and disturbing. Currently we discharge about five million patients from ICUs in the United States alone. With changing demographics and further improvements in ICU care, this number can be expected to increase. This will lead to an increased incidence of both PICS and healthcare costs unless we act to prevent or mitigate PICS.
The Society of Critical Care Medicine (SCCM) has led the effort to address these newly identified needs. The momentum has been fueled by the acceptance that critical care is not defined by the ICU stay alone, but by what happens before and after ICU admission. SCCM has held two stakeholder conferences that gathered representatives from national professional organizations of the noncritical care community who play roles in our patients’ recoveries.(1,2) The goal was to spread awareness, to improve care for PICS, and to promote collaborative research. Although we do not deliver care in the outpatient community, we are responsible for informing and working with those who do.
SCCM has also provided several resources for patients and families with PICS. They are the ones most directly affected, and they need to be prepared and armed with information. SCCM has established the THRIVE Initiative, which gives grants and awards to those working to improve the care that patients and families with PICS receive and promotes peer-to-peer support collaboratives.
The recognition of PICS has stimulated research into ways to prevent or mitigate its impact. Although the research is in its early stages, there is a drive to implement what the ongoing research has shown to be beneficial in addressing these largely unmet needs. Knowing how much our patients and their families may suffer, we feel ethically and professionally responsible to act.
What can critical care clinicians do? There are several strategies that have been shown to decrease PICS. They include the following(1-4):
• Risk factor reduction
• Early progressive mobility programs
• ABCDEF bundle implementation
• More healing ICU environments
• Patient- and family-centered care practices
• Recognition and effective treatment of delirium in the ICU
• Post-ICU rehabilitation and follow-up clinics
• Early psychological intervention and support
• ICU diary programs
• Functional reconciliation checklists
The first six of these strategies are already being promoted for other well-documented benefits. Their additional potential impact on PICS gives us further motivation to implement them.
Now that we understand the magnitude of the cost of living after surviving critical illness, we have a moral obligation to our patients and their families to work to diminish that cost and to help them deal with it. To our credit, such efforts are spreading widely and quickly.
Ultimately, our success as critical care practitioners will not be judged by survival rates alone, but also by what our patients and their families really want. Survival is not the end point for them. They want to return to the highest possible quality of life. They want to thrive. That is clearly what we really want for them too.
1. Needham DM, Davidson J, Cohen H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012 Feb;40(2):502-509.
2. Elliott D, Davidson JE, Harvey MA, et al. Exploring the scope of post-intensive care syndrome therapy and care: engagement of non-critical care providers and survivors in a second stakeholders meeting. Crit Care Med. 2014 Dec;42(12):2518-2526.
3. Harvey MA, Davidson JE. Postintensive care syndrome: right care, right now...and later. Crit Care Med. 2016 Feb;44(2):381-385.
4. Davidson JE, Harvey MA, eds. Symposium on Post-Intensive Care Syndrome. AACN Adv Crit Care. 2016 April-June;27(2):183-240.