Post-intensive Care Syndrome: What Happens After the ICU?
By Kathryn Radigan, MD, MSc
Attending Physician, Division of Pulmonary and Critical Care, Stroger Hospital of Cook County, Chicago
Dr. Radigan reports no financial relationships relevant to this field of study.
The number of ICU patients admitted annually continues to grow, with most recent estimates reaching 5.7 million.1 As there are growing numbers of critically ill patients, sepsis survivorship also has grown as a substantial public health concern, with a significant number of survivors diagnosed with post-intensive care syndrome (PICS).2 PICS is defined as a new or worsening impairment in mental, cognitive, or physical health status after critical illness and lasting beyond hospitalization for acute care.3 It is important to go beyond saving lives in the ICU and devote additional time and attention to preventing and treating the psychiatric, cognitive, and physical sequalae of ICU illness in the follow-up setting.
Epidemiology. Although the exact prevalence of PICS among survivors of critical illness is unknown, it is estimated that one-quarter to one-half or more will suffer from some form of PICS.3 Psychiatric illness after critical illness is widely underdiagnosed, with a national database registry reporting that only 1% of survivors of critical illness had a new psychiatric diagnosis of anxiety or depression but almost 20% were receiving one or more psychoactive medications.4 Four times more common than PTSD, depression has been reported in one-third of patients 12 months after their ICU stay.5 Cognitive impairment, including difficulty with executive function, memory, attention, and mental processing speed, is reported to occur in one-fourth of survivors, with some studies reporting an incidence up to 78%.6 Physical limitations can vary quite substantially, but it is estimated that almost half of patients who are admitted with sepsis, multi-organ failure, or prolonged mechanical ventilation will suffer from ICU-acquired weakness.7 Herridge et al revealed that 100% of acute respiratory distress survivors complained of weakness even five years after their hospitalization.8
Risk Factors. Common risk factors for the development of PICS include pre-existing illnesses such as neuromuscular disorders, dementia, psychiatric illness, and lower pre-ICU intelligence. Furthermore, ICU-specific factors also can contribute and may include length of mechanical ventilation, delirium, sepsis, ARDS, use of corticosteroids, hyperglycemia, immobility, sedation, or hypoxia.3 Additional risk factors include traumatic or delusional memories in the ICU, physical restraints, younger age, less education, female gender, personality type, and pre-ICU psychiatric symptoms.
Diagnostic Approaches in ICU, Follow-up Clinics. Every patient who is critically ill should undergo a thorough history and examination for the signs and symptoms of PICS. Addressing whether a patient has symptoms should not be the responsibility of the patient. Instead, the clinician should take ownership of recognizing when new or worsening cognitive, psychiatric, and physical signs and symptoms are found. Cognitive complaints often include difficulties in accomplishing executive tasks and hardships with attention, concentration, memory, mental processing speed, and executive function. Psychiatric complaints can vary substantially and include anxiety, depression, or PTSD. Physical complaints include weakness that ranges from generalized poor mobility and multiple falls to quadriparesis and tetraparesis. The identification of each component should occur as an inpatient and/or outpatient and rely on the elucidation of specific findings for each domain corroborated by examination and confirmatory testing when needed. As ICU clinics are not common practice, many ICU physicians will see patients in pulmonary follow-up clinics. There is no standard testing available for PICS, but applying a testing scheme used by the most experienced post-ICU clinics is the best option for diagnosis. For cognitive evaluation, the Montreal Cognitive Assessment and the Trail Making Test A and B are appropriate options. For depression, anxiety, and PTSD, the best options include the Beck Depression Inventory II, Hospital Anxiety and Depression Scale, and the PTSD checklist. If any patient complains of weakness, it is best for a medical professional trained in the diagnosis of ICU-acquired weakness to evaluate the individual. This medical professional should use a formal assessment. Formal electromyography and nerve conduction studies can confirm the diagnosis, if needed. Generally, there should be an extremely low threshold to consult and involve a multidisciplinary team that includes staff such as neurologists or neuropsychologists, psychiatrists, physical therapists, occupational therapists, and speech therapists.
Prevention and Treatment in ICU and Follow-up. To minimize risk of developing PICS, the ABCDE bundle approach has been advocated, especially in those critically ill patients receiving mechanical ventilation. It includes the following strategies: Awakening and Breathing Coordination with daily sedative interruption and ventilator liberation practices, Delirium monitoring and management, and Early ambulation in the ICU.
ICU physicians naturally spend most of their time on the medical concerns of critically ill patients. Some of this time is spent trying to mitigate PICS from the ABCDE aspect in the above model. Additional effort needs to be applied in preparing patients for the transition out of the ICU with the FGHI elements of the model. Family presence, engagement, and empowerment; Good handoff communication; Hand the patient/family written information; and ICU diaries. This aspect of the bundle stresses the importance of patient-centered care, which is delivering care that is respectful of and responsive to specific patient preferences, needs, and values, and ensuring that patient values guide clinical decisions.9 These areas are reviewed in detail below.
Family Presence, Engagement, and Empowerment. Family presence starts with encouraging family members to be present in the ICU. Adapting an environment that encourages family presence also may include a more open ICU without restrictions. Ninety percent of ICUs surveyed in 2008 maintained a restrictive visitation policy.10 Previous research has shown that flexible visitation in the ICU may decrease a patient’s anxiety, confusion, agitation, cardiovascular complications, and ICU length of stay while increasing feelings of security, patient satisfaction, and safety without an increased risk of infection.11,12 To foster the idea of family presence, it also may be helpful to redesign units to improve family comfort.
The engagement of family members includes keeping patients and family actively involved in the decision-making process by ensuring daily updates are given and making efforts for regularly scheduled meetings. It is also important for family members to feel like they are helping their loved one. For instance, family members can help by reorienting patients and talking about family and friends. They may also bring in sensory aids (hearing aid, glasses, etc.), decorate the room with the patients’ belongings to enhance comfort and familiarity, participate in mobilization, and assist with ICU diaries. Family participation on rounds also may be an option for further engagement.
Family empowerment starts with education. It is important to stress to patients and families that survivors of critical illness may suffer from unusual thoughts, mental illness, cognitive losses, and functional losses. It is empowering for both patients and families to know other ICU patients are suffering from similar problems and that they are not alone, abnormal, or unusual. Also, it is important to educate families regarding these complications so they can be proactive in terms of knowing what to look for and advocating for their loved ones when they notice concerning patterns of behavior or physical function. Unfortunately, most ICU survivors do not have the advantage of following up with a physician who is both aware of PICS and knows how to best take care of these patients outside an ICU survivor clinic. Family knowledge is especially important in this setting.
Good Handoff Communication. Good handoffs may include medication reconciliation at the end of the ICU stay, functional reconciliation by nurses, and a comprehensive physician sign-out. A handoff occurs when a departing caregiver transfers primary authority and responsibility for providing clinical care to an oncoming caregiver.13 It would be ideal for both physicians and pharmacists to perform medication reconciliation prior to transition of care. Recently, investigators found that medication reconciliation by pharmacists at the time of ICU transfer is an effective safety intervention, which can lead to a significant decrease in medication transfer errors and a cost-effective reduction in potential harm.14 Nurses should be encouraged to provide functional reconciliation in which the nurse compares the current functional status with pre-hospitalization status and discusses the therapies the patient is receiving at the current time. Ideally, physicians should not be limited by the basic physician sign-out but also address the cognitive, mental health, and physical status of the patient. Floor referrals for patients who may need to be reordered immediately should be discussed and may include respiratory, physical, occupational, and speech therapists. It is also important to involve physiatrists as early as possible, and consider spiritual, financial, social work, psychological, or psychiatric referrals. If sign-offs from the ICU do not include a plan of care detailing referrals that are necessary, the patient may suffer from delay of care or no care at all. Taking proactive measures can ensure all aspects of the patient’s care are addressed fully and without delay.
Additional transitional aspects of care that ICU physicians may want to highlight include letters to follow-up physicians. Letters that update the physicians regarding events of hospitalization but also educate physicians about PICS are ideal. It is helpful to list references and websites for the follow-up physicians to discover more information and provide as a reference for family. An example of a letter is included on the Society of Critical Care Medicine (SCCM) website under ICU liberation, titled “Physician letter (Adult)” (Available online at: ).
Hand the Patient/Family Written Information. It is also important not only to provide verbal education but also to hand the patient and/or family written information addressing PICS. If available, additional information regarding post-ICU support groups for patients and families also may be helpful. Providers might find more useful tools at the SCCM website (Available at: ) and the website for ICUsteps (Available at: ).
ICU Diaries. Keeping ICU diaries for patients is a new approach to help patients understand what happened in the ICU. In one specific study, nursing staff maintained diaries for the duration of the patients’ ICU stay. The diaries contained specific information about the patients’ physical condition, procedures and treatments, events that occurred on the unit, and significant events that occurred outside the unit.15 These diaries were found to affect both anxiety and depression positively, even after the ICU admission for the individual patients.
Post-ICU Clinic. ICU clinics designed specifically with the ICU survivor in mind have been developed in recognition of the need to care for patients and families after the sequelae of critical illness. The goal is to specifically address the medical, mental health, social support, and counseling needs after critical illness, with the overall goal to improve quality of life and reduce readmission rates. Although the data regarding their benefit are controversial, it is hopeful that after further development of the ideal model and additional research asking the correct questions, clinic interventions such as these may definitively improve outcomes for PICS survivors and/or their families.
One such clinic that has substantial experience is the Vanderbilt ICU Recovery Center. Although the Vanderbilt model uses a medical ICU’s nurse practitioner, clinical pharmacist, neurocognitive psychologist, and a caseworker, many of these roles can be provided by the critical care physician with the already established support within the clinic. See Table 1 to see a list of suggested roles that are helpful to fulfill in the follow up setting. If the physician has minimal support within the clinic setting, it is also helpful to ask patients to complete electronic questionnaires prior to the ICU follow-up visit to reduce workload of post-ICU care providers and ask a physiotherapist to perform comprehensive physical screening. Additional stakeholders that may be involved include a dietitian, palliative care specialist, rehabilitation medicine specialist, speech language pathologist, primary care provider, occupational therapist, and geriatrician.16 The Vanderbilt ICU Recovery Center takes referrals from all ICUs. Once the referral is made, the MICU nurse practitioners review the chart for inclusion and exclusion criteria. Adapted criteria from the Vanderbilt group can be seen in Table 2. To assist with follow-up rate, the providers have found that following the patient while inpatient has improved familiarity with the ICU Recovery Center’s function and subsequent follow-up. Even if this model cannot be emulated, it is helpful to learn from what is addressed within this setting and adapt to the resources available within the specific clinic setting. Some centers specialize in goal management training, a program that targets attention and executive dysfunction, which also may be helpful.17 Although Vanderbilt University Medical Center has been working on their program since 2012, they still stress the barriers to effective post-ICU care remain evident. Two of the most prominent obstacles remain the logistics of recruiting and scheduling patients and the availability of adequate resources. The ICU Recovery Clinic at Vanderbilt University Medical Center is one example of how critical care providers can use a PICS clinic to improve the care of patients. As already mentioned, the model may be adapted to the specific resources within a hospital, but the goal is to optimally manage the transition of the patient’s care to a general practitioner.
Table 1. Roles in Constructing Patients’ Plan of Care
Adapted from: Huggins EL, et al. A clinic model: Post-intensive care syndrome and post-intensive care syndrome-family. AACN Adv Crit Care 2016;27:204-211.
Table 2. Recommended Inclusion and Exclusion Criteria for an Appointment in the Post-Intensive Care Syndrome Clinic
Primary: Critically ill adults, especially those with diagnosis of acute respiratory distress syndrome or sepsis
Secondary (one or more of the following):
Adapted from: Huggins EL, et al. A clinic model: Post-intensive care syndrome and post-intensive care syndrome-family. AACN Adv Crit Care 2016;27:204-211.
Summary. As there are growing numbers of critically ill patients, the number of patients diagnosed with PICS also has grown substantially. Critical care physicians can improve long-term functioning and quality of life for survivors. It is paramount to prevent and treat PICS with the ABCDE/FGHI Bundle and ensure that all patients and families are educated and empowered. Furthermore, taking the initiative to develop an ICU clinic designed specifically with the ICU survivor in mind and adapted to the specific resources within the particular clinic setting may be the next best step in fostering the recovery process following an ICU admission.
- Wunsch H, et al. Comparison of medical admissions to intensive care units in the United States and United Kingdom. Am J Respir Crit Care Med 2011;183:1666-1673.
- Iwashyna TJ, et al. Population burden of long-term survivorship after severe sepsis in older Americans. J Am Geriatr Soc 2012;60:1070-1077.
- Needham DM, et al. Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders’ conference. Crit Care Med 2012;40:502-509.
- Wunsch H, et al. Psychiatric diagnoses and psychoactive medication use among nonsurgical critically ill patients receiving mechanical ventilation. JAMA 2014;311:1133-1142.
- Jackson JC, et al. Depression, post-traumatic stress disorder, and functional disability in survivors of critical illness in the BRAIN-ICU study: A longitudinal cohort study. Lancet Respir Med 2014;2:369-379.
- Pandharipande PP, et al. Long-term cognitive impairment after critical illness. N Engl J Med 2013;369:1306-1316.
- Stevens RD, et al. Neuromuscular dysfunction acquired in critical illness: A systematic review. Intensive Care Med 2007;33:1876-1891.
- Herridge MS, et al. Functional disability 5 years after acute respiratory distress syndrome. N Engl J Med 2011;364:1293-1304.
- Epstein RM, Street RL, Jr. The values and value of patient-centered care. Ann Fam Med 2011;9:100-103.
- Cacioppo JT, Hawkley LC. Social isolation and health, with an emphasis on underlying mechanisms. Perspect Biol Med 2003;46:S39-S52.
- [No authors listed]. Family presence: Visitation in the adult ICU. Crit Care Nurse 2012;32:76-78.
- Davidson JE, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med 2007;35:605-622.
- Patterson ES, Wears RL. Patient handoffs: Standardized and reliable measurement tools remain elusive. Jt Comm J Qual Patient Saf 2010;36:52-61.
- Bosma LBE, et al. The effect of a medication reconciliation program in two intensive care units in the Netherlands: A prospective intervention study with a before and after design. Ann Intensive Care 2018;8:19.
- Knowles RE, Tarrier N. Evaluation of the effect of prospective patient diaries on emotional well-being in intensive care unit survivors: A randomized controlled trial. Crit Care Med 2009;37:184-191.
- Huggins EL, et al. A clinic model: Post-intensive care syndrome and post-intensive care syndrome-family. AACN Adv Crit Care 2016;27:204-211.
- Jackson JC, et al. Cognitive and physical rehabilitation of intensive care unit survivors: Results of the RETURN randomized controlled pilot investigation. Crit Care Med 2012;40:1088-1097.
The number of ICU patients admitted annually continues to grow, with most recent estimates reaching 5.7 million. As there are growing numbers of critically ill patients, sepsis survivorship also has grown as a substantial public health concern, with a significant number of survivors diagnosed with post-intensive care syndrome (PICS). It is important to go beyond saving lives in the ICU and devote additional time and attention to preventing and treating the psychiatric, cognitive, and physical sequalae of ICU illness in the follow-up setting.
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