BOOK CHAPTER

What happens to critically ill patients after they leave

the ICU?
Jason H. Maley and Mark E. Mikkelsen
Evidence-Based Practice of Critical Care, 3, 11-16.e1

Abstract:
Each year over 5.7 million patients are admitted to intensive care units (ICUs) in the United
States, and millions more internationally. Improvements in critical care delivery have resulted
in significantly reduced mortality, leading to a growing number of ICU survivors over the past
several decades. In fact, the majority of patients cared for in an ICU, even the most severely
ill, will survive to leave the hospital. The path from survival to recovery after critical illness is
marked with numerous obstacles, beginning in the ICU and continuing long after hospital
discharge. Many survivors of critical illness experience post-intensive care syndrome (PICS),
defined as new or progressive difficulties in cognition, mental, and/or physical health that
linger after critical illness. In this chapter, we explore the experience of patients after they
survive critical illness, including the epidemiology of ICU survivorship, the challenges faced,
and the opportunities to improve the recovery and lives of this growing population of
patients.

Keywords:
epidemiology, intensive care unit, long-term outcomes, post-intensive care syndrome,
survivorship

Each year over 5.7 million patients are admitted to intensive care units (ICUs) in the United
States; worldwide, millions more are admitted. 1 Over the past several decades,
improvements in critical care delivery have resulted in significantly reduced mortality, leading
to a growing number of ICU survivors. 2 In fact, the majority of patients cared for in an ICU
will survive to leave the hospital.

The path from survival to recovery after critical illness is marked with numerous obstacles,
beginning in the ICU and continuing long after hospital discharge. Many survivors of critical
illness experience post-intensive care syndrome (PICS), defined as new or progressive
difficulties in cognition, mental and/or physical health that linger after critical illness. In this
chapter, we explore the experience of patients after they survive critical illness, including the
epidemiology of ICU survivorship, the challenges faced, and the opportunities to improve
the recovery and lives of this growing population of patients.

Looking back to forward

Prior to understanding “what happens to ICU survivors after they leave the ICU,” we must
begin by examining the lives of patients before critical illness. Increasingly, studies of health-
related quality of life, mortality, and health-care resource utilization following critical illness
have revealed that post-ICU outcomes may have as much to do with a patient’s health prior
to the ICU as they do with critical illness itself. 3 , 4

Critical illness may come as an “asteroid strike” (e.g., the young, previously healthy patient
who incurs sepsis or trauma). However, for most, critical illness arrives on the heels of
gradual health deterioration. 5 From this trajectory perspective, new insights have emerged.
For example, pre-ICU hearing and vision impairment have been strongly associated with
poor functional recovery in the 6 months following critical illness. 6 Furthermore, a higher
burden of medical (e.g., chronic obstructive pulmonary disease, congestive heart failure,
diabetes) and behavioral health comorbidities (e.g., anxiety, depression) prior to an ICU stay
are independently associated with worse appetite, fatigue, pain, joint stiffness, and
breathlessness at 12 months post-ICU discharge. 7

Remarkably, in a large matched cohort of ICU survivors within the Scottish ICU registry,
factors relating to the severity of acute illness had little or no influence on post-ICU health-
care resource use. In contrast, pre-illness factors, including prior hospital resource use and
preexisting comorbidities had the strongest association with subsequent health-care
resource use. 4 Similarly, in a large prospective study of health-related quality of life following
ICU survival in Sweden, investigators surveyed survivors over a 36-month period. The
authors found that the majority of the reduction in health-related quality of life after critical
illness was related to preexisting conditions rather than the critical illness itself. 8 In
understanding the epidemiology of critical illness at various steps along the health-care
continuum, these pre-illness factors serve as a critical starting point to the story of ICU
survivorship.

Within the intensive care unit

Opportunities to improve ICU survivorship begin in the ICU, as a patient begins to improve
from an episode of shock, respiratory failure, or other critical illness. At these early stages,
survivors and their loved ones crave information. 9 Unfortunately, issues of survivorship are
rarely addressed during an ICU stay. 10

Fortunately, ICU clinicians are well positioned to begin the process of patient and family
education. To close the gap between what survivors need and what they receive at this
critical juncture, we recommend the following steps:

Inform the patient and family of what has transpired in words that they can understand,
including their diagnosis (e.g., “sepsis, caused by a pneumonia”) and prognosis.
When discussing prognosis, we recommend providing anticipatory guidance for
what to expect in the short and longer term.

As most patients will have some degree of cognitive impairment at the time of
 ICU discharge, and as a strategy to reduce long-term psychological stress
amongst survivors and their caregivers, we recommend the use of an ICU diary
to facilitate meeting this first aim. 11 12 13 14 The diary, which includes entries by
staff and family, can be reviewed during the hospitalization and thereafter, to
reorient the patient to what they experienced and how far they have come in their
recovery.

Given the prevalence of functional impairment after critical illness, engage physical and
occupational therapists and social work colleagues early to ensure that appropriate
therapies are continued and postdischarge services are arranged.

In partnership with providers on the medical or surgical ward who will be discharging
the patient, ensure that the discharge summary includes pertinent details of the ICU
stay and highlights that the patient is at high risk for developing PICS.

For those who develop PICS, provide patients with information about regional support
groups and post-ICU clinics to connect patients and families with other survivors and
centers with experience and expertise in ICU survivorship. 15

Though further evidence is needed to optimally guide these novel interventions, the potential
exists to meaningfully impact the recovery of ICU survivors and their families. 16 , 17

On the medical wards

At the time of discharge from the ICU, patients commonly transfer to a medical or surgical
inpatient ward. Alternatively, select patients leave the hospital directly from the ICU to
recover at a long-term acute care hospital (LTACH) or, occasionally and in select cases,
directly home. 18 This period of transition from the ICU presents a number of challenges to
patients and families.

In an ICU setting, patients and families find comfort in close monitoring and 1:1 or 1:2 nurse-
to-patient ratios, as well as frequent contact with ICU physicians. When moved to a medical
ward, a change in these factors may result in physical and psychological disturbances
known as relocation stress. 19 , 20

On the ward, patients and families experience less frequent contact with nurses, physical
therapists, and physicians and advanced practice professionals. Patients who have suffered
loss of physical function as a result of their ICU stay, and are dependent on assistance from
others, may have the most difficulty with this transition. Those patients who functioned
independently prior to their critical illness frequently have a new need for assistance with
eating, bathing, toileting, and other activities of daily living. With more patients for a given
nurse and less frequent monitoring, patients may experience isolation, fear, anxiety, and
depression. 21 , 22
Following transition to the ward, given the potential for acute deterioration amongst this
vulnerable patient population, readmission to the ICU prior to leaving the hospital is a
known, albeit rare, risk. In a retrospective cohort study of 196,202 patients from 156 medical
and surgical ICUs within 106 community and academic hospitals, Brown and colleagues 23
found that approximately 2% of ICU survivors experienced ICU readmission from the ward
within 48 hours, and 4% within 120 hours. The most common reasons for readmission in
this cohort were respiratory failure, respiratory arrest, heart failure, and cardiac arrest.

Readmitted patients had a significantly higher mortality (20.7%) than first-time ICU
admissions (3.7%), consistent with international epidemiological studies. 24 While some
patients were readmitted due to inadequate resolution of the primary problem, many
readmissions were due to a new problem such as aspiration, venous thromboembolism, or
new infection.

While an ICU readmission is an important, potentially pivotal, event in a patient’s health

trajectory, evidence suggests that readmissions are not preventable. 25 Furthermore, while
organizational factors, such as being discharged at night or when experiencing ICU strain,
are associated with ICU readmission, ICU readmissions are not causally linked to in-hospital
mortality. 26 27 28 As an event that (1) reflects a state of frailty, (2) is rarely preventable, and
(3) is not causally linked to outcome, its consideration as a measure of ICU quality has been
undermined.

Post-acute care
Given functional impairments, patients frequently require post-acute care services or
placement following an ICU stay. Post-acute care includes home health services, skilled
nursing facility, or long-term acute care hospital placement. Less frequently, given national
policy restricting access to patients with 1 of 13 qualifying conditions, survivors of critical
illness in the United States are admitted to acute rehabilitation. 29 However, as a qualifying
condition, patients who survive a stroke are more often discharged to acute rehabilitation.

The transition to post-acute care marks another potential period of relocation stress. To
date, little is known about post-acute care use after critical illness: for example, whether
outcomes differ across post-acute care options is unknown. What is known is that post-
acute care use is costly, albeit variably so, ranging from an average of US$2720 for a home
health-care episode, to US$11,357 for placement in a skilled care facility, to US$15,000 for
acute rehabilitation. 29

LTACHs, a costly post-acute care option (e.g., standard prolonged mechanical ventilation
LTACH payment is $79,128), provide an opportunity for chronically critically ill patients to
leave the ICU, serving a “step-down” purpose to facilitate the lengthy recovery process of
such patients. 29
While LTACH utilization has increased, long-term outcomes remain poor. Between 1997 and
2006, LTACH admissions increased from 13,732 to 40,353. At 1 year, more than half of these
patients had died, with a 1-year mortality rate of 50.7% for LTACH admissions for the period
1997–2000 and 52.2% for those admitted for the period 2004–2006. 30 Further, in the year
following an LTACH admission, transitions in care were the norm, with a median of four
transitions of care and two of three patients being rehospitalized at least once. 31

To better understand the experience of the chronically critically ill while in an LTACH, Lamas
and colleagues conducted a mixed-methods study examining health-related quality-of-life,
expectations for the future, and planning for setbacks among patients and families. 32 These
investigators conducted semistructured interviews with a total of 50 subjects (30 patients
and 20 surrogates), and performed thematic analysis of recorded conversations. Patients
reported their quality of life to be poor, and surrogates reported stress and anxiety. Patients
and families revealed optimistic health expectations, yet there was poor planning for medical
setbacks, coupled with disruptive care transitions. While nearly four of five patients and their
families identified going home as a goal, only 38% were at home at 1 year following
admission. The average stay was 48 days (range, 8 to 203 days), with the most common
discharge destination being a skilled nursing facility. For patients scheduled for discharge
from the ICU to an LTACH, to bridge the gap between expectations and outcomes, we
recommend an ICU communication strategy that encourages the patient and family to hope
for the best, while preparing for the worst.

Rehospitalization
Readmission to the hospital following an episode of critical illness is common and serves as
a significant obstacle to recovery after critical illness. In addition to the new health
challenges that a hospital readmission brings, readmission to the hospital may exacerbate
symptoms of PICS, including posttraumatic stress disorder (PTSD), depression, anxiety, and
physical impairment.

Through examination of the New York Statewide Planning and Research Cooperative
System, an administrative database of all hospital discharges in New York State, Hua and
colleagues described the epidemiology of readmissions from a cohort of nearly 500,000 ICU
survivors over 3 years. 33 Readmission within 30 days occurred in 16% of patients, with over
one-quarter (28.6%) of these patients requiring care in an ICU during their readmission. Most
often, early readmissions following critical illness were due to a new episode of sepsis or
congestive heart failure. Hospital mortality in this cohort was 7.6% for all rehospitalizations
and 15.7% for patients who received ICU care during the readmission. A longer index
hospitalization was the factor most strongly associated with early rehospitalization. Other
factors associated with early hospital readmission were initial discharge to a skilled nursing
facility, dialysis, and an index hospitalization diagnosis of sepsis.
Sepsis survivors, in particular, are at high risk for hospital readmission, as nearly one out of
four survivors are rehospitalized within 30 days. 34 Liu and colleagues 35 examined 6344
sepsis patients in an integrated health system and found that the need for intensive care
during an initial sepsis admission was predictive of the need for early readmission following
sepsis, compared with sepsis admissions that did not require ICU admission. After a sepsis
hospitalization, healthcare utilization increased nearly threefold compared with presepsis
levels.

Long-term survival
Survivors of critical illness may remain at higher risk of death for years following critical
illness, and particularly in the first few months after their hospitalization. While partially
attributable to preexisting medical conditions, the association between critical illness and an
increased risk of subsequent mortality has been identified consistently across continents.

As shown in Table 3.1 (t0010) , survivors of critical illness experience a higher mortality rate
compared with hospital or general population controls in multiple large retrospective studies
across several countries. This increased mortality has been observed up to 5 years from the
time of discharge from the hospital. A variety of patient and disease-specific factors may
play a role in these findings. In a Dutch cohort of over 91,000 ICU patients who survived to
hospital discharge, patients admitted to medical intensive care units and those with cancer
had significantly worse outcomes over the 3-year study period compared with elective
surgery and cardiac surgery patients who required intensive care. 36 In a matched,
retrospective cohort study of United States Medicare beneficiaries, ICU survivors had a
higher 3-year mortality compared with hospitalized controls, a difference largely driven by
ICU survivors who received mechanical ventilation. 37 These patients had markedly higher
mortality (57.6% vs. 32.8% hospital controls), compared with ICU survivors who did not
receive mechanical ventilation (38.3% vs. 34.6% hospital controls). The difference in
mortality largely occurred during the first 6 months after discharge; in this period, mortality
was 30.1% for those receiving mechanical ventilation, compared with 9.6% for matched
hospital controls. Discharge to a skilled nursing facility, relative to discharge home, was
identified as an additional risk factor for higher 6-month mortality.

TABLE 3.1
Long-Term Mortality Risk After Critical Illness.

Author Period Country Design Study Control ICU Adjusted

of Population Survivor Hazard
Study Mortality Ratio for
Mortality
Brinkman 2007– Netherlands Retrospective 91,203 General Mortality at 1-year
et al. 36 2010 cohort study medical population 1, 2, and 3 mortality:
and data from years: medical
surgical national 12.5%, patients
ICU registry 19.3%, and HR 1.41 (
 patients 27.5%, P < .05)
respectively compared
with
general
ICU
population
Lone et 2005– Scotland Matched 7656 Hospital Mortality at 5-year
al. 4 2010 retrospective medical controls 1 and 5 mortality:
cohort using and from years: 1.33 (
the Scottish surgical Scottish 10.9% and .001)
ICU registry ICU registry of 32.3%, compared
patients acute respectively with
hospital hospital
admissions controls
Wunsch 2003– United Matched 35,308, Hospitalized Mortality at 3-year
et al. 37 2006 States retrospective medical and non- 6 months mortality:
cohort of and hospitalized and 3 1.07 (
Medicare surgical Medicare years: .001)
beneficiaries ICU beneficiaries 14.1% and compared
patients 39.5%, with
respectively hospital
controls;
2.39 (
.001)
compared
with
general
population

In a cohort study of 5259 Scottish ICU survivors matched with hospital controls, examined
over a 5-year period, Lone and colleagues found that ICU survivors had higher mortality
(32.3% vs. 22.7%) and greater resource utilization (mean hospital admission rate, 4.8 vs.
3.3/person/5 years) at a higher cost ($25,608 vs. $16,913/patient). 4

Given increased mortality and resource utilization among critical care survivors, an important
consideration after an ICU admission (or an ICU readmission during the same
hospitalization) is whether aggressive care is consistent with the patient’s goals and
preferences. Through deliberate and empathic communication, when discussing an
individual’s diagnosis and prognosis, an important goal should be to elicit patient’s values
and preferences. Clinicians should engage the expertise of palliative care colleagues, as
necessary, in these important discussions. With a shared understanding of what is valued
and important to the patient, it should be anticipated that some patients will opt for comfort
measures and/or hospice care at the time of hospital discharge.

Long-term functional outcomes

Patients and families commonly experience long-term impairments in health-related quality
of life following critical illness. Physical, psychiatric, and cognitive impairments that follow an
episode of critical illness can be severe and enduring. New or worsened impairment in one
or more of these domains is common following an episode of critical illness and defines
PICS. 38

Patients who have experienced severe and prolonged critical illness, particularly due to
septic shock and respiratory failure, are at greatest risk for development of PICS. Additional
risk factors associated with long-term physical and/or neuropsychological impairment
include prolonged mechanical ventilation, deep sedation, multisystem organ failure,
prolonged ICU length of stay, duration of delirium, glucose dysregulation, and the use of
corticosteroids. 39 40 41 42 43

Physical impairment is common following critical illness, occurring in over half of ICU
survivors. 44 New or progressive cognitive impairment is an important and underrecognized
consequence of critical illness. 45 In a prospective study of survivors of shock and
respiratory failure, Pandharipande and colleagues performed neurocognitive testing on
survivors of critical illness. 42 Patients had a median age of 61 years and only 6% had
cognitive impairment at baseline. The authors reported that 40% of survivors performed
neurocognitive testing at a level consistent with moderate traumatic brain injury 3 months
following their illness, 26% performed at a level consistent with mild Alzheimer disease, and
these impairments frequently persisted. Psychiatric illness seen in PICS manifests as
symptoms of anxiety, depression, or PTSD. This commonly affects both patients and their
family members.

Further impairments to quality of life may occur in the form of financial challenges due to
medical bills and job loss (i.e., financial shock), and interpersonal challenges resulting from a
change in family dynamics and family members serving as caregivers. Joblessness is
common after critical illness. In a study of acute respiratory distress syndrome (ARDS)
survivors conducted by Kamdar and colleagues, 46 joblessness and lost earnings were
assessed 12 months after an ICU stay. They found that 1 year following hospitalization for
ARDS, 44% of previously employed survivors, with a mean age of 45 years, were
unemployed. They calculated that 71% of nonretired survivors accrued lost earnings
averaging nearly US$27,000. Survivors displayed a shift towards government-funded health
care, with a 14% absolute decrease in private health insurance (from 44% pre-ARDS) and a
16% absolute increase in Medicare and Medicaid use (from 33%).

Resilience and posttraumatic growth

Resilience is a potentially modifiable trait that relates to one’s ability to overcome setbacks
and obstacles in life. In a study of ICU survivors from two medical intensive care units within
a single institution, survivors were surveyed 6 to 12 months after ICU discharge for
symptoms of PICS, to assess resilience, and to understand barriers to and facilitators of
recovery. Resilience, normal or high in 63% and 9% of survivors, respectively, was inversely
correlated with self-reported executive dysfunction, symptoms of anxiety, depression, and
PTSD, difficulty with self-care, and pain ( P < .05). 44

Beyond resilience, the concept of posttraumatic growth describes positive change and
personal growth following a traumatic experience. This has been described in the pediatric
literature, related to parents of intensive care patients. 47 Though data in adult ICU
populations are lacking, we believe that posttraumatic growth and resilience can be fostered
through the implementation of a longitudinal care delivery pathway that spans the ICU to
outpatient practice and is designed to mitigate PICS and educate, empower, and support
the patient and family through recovery.

Conclusion
Survivors of critical illness commonly suffer long-term impairments that impact upon health-
related quality of life. Furthermore, survivors often experience medical setbacks, manifested
as increased health-care utilization, and their survival is threatened. To combat these losses
and threats, survivors (patients and families) need to be educated and empowered,
beginning with a simple conversation between ICU clinicians and patients and families prior
to discharge from the ICU. This early intervention can set the stage for further education
about PICS and arrangement of services to manage and rehabilitate cognitive, psychiatric,
and physical impairments. While the optimal postdischarge care pathway remains unclear,
novel strategies are being implemented to meet the needs of survivors more effectively.

AUTHORS’ RECOMMENDATIONS

Post-intensive care syndrome, defined as new or progressive difficulties in

cognition, mental health, and/or physical health after critical illness, is common.

Health-related quality of life after critical illness is low; however, preexisting

conditions contribute substantially to the reduced quality of life.

Transition to the floor can be challenging.

Relocation stress, manifest as isolation, fear, anxiety, and depression and

exacerbated by dependence on others for activities of daily living, is common.

ICU readmissions are uncommon and are often not preventable.

Post-acute care use, given survivors’ functional impairments, is common and

costly, and includes home health services and placement in skilled care facilities
and long-term acute care hospitals.

In the United States, despite functional impairments, discharge to acute

rehabilitation is uncommon for many survivors of critical illness given national
 policy; however, certain patients (e.g., stroke) are more likely to receive this type
of post-acute care as 1 of the 13 preferred, qualifying conditions.

Nearly one out of five survivors of critical illness will be rehospitalized within 30
days; more than one out of four of these rehospitalizations will require care in an
ICU again.

Survivors of critical illness incur a long-term mortality risk.

Despite these losses and impairments, resilience amongst survivors of critical

illness is the norm, and the potential for posttraumatic growth exists.

To promote a culture of resilience amongst survivors, providers need to educate,

empower, and prepare patients and caregivers for life after critical illness; these
efforts should begin in the ICU.

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