Long-Term Care of Patients After Discharge from the Intensive Care Unit
Christina Jones and Richard D Griffiths
Intensive Care Research Group, ICU Whiston Hospital & School of Clinical Science, University of
Liverpool, UK
Traditionally, following discharge from the intensive care unit (ICU), a patient’s care was placed in
the hands of the original admitting team. However, in recent years, it has become clear that
patients encounter problems, both in the acute setting and once they have returned home, that
may not be addressed by this method. Sepsis patients account for a significant proportion of
individuals admitted to the ICU and therefore represent a large population that require post-ICU
assessment and care. The recognition of deterioration in patients recovering from critical illness
once they have moved to general wards may be enhanced by following patients through an
outreach process in the first few days. Simple interventions such as training ward staff in the care
of tracheostomies may be life saving. In the longer term, many ICU patients report a core of
physical and psychological problems, some of which respond to structured rehabilitation. Early
recognition of severe psychological distress such as post-traumatic stress disorder allows the
prompt referral of these patients for appropriate help before the condition becomes chronic. Adv
Sepsis 2006;5(3):88–93.
Severe sepsis is a leading cause of admission to intensive care units (ICUs), with studies in the
US and Europe demonstrating that it accounts for up to 25% of patients requiring ICU treatment
[1–4]. Until recently, research into outcome following critical illness focused on the mortality rate
after discharge from the ICU. Gradually, the focus has shifted to morbidity, with the intention of
helping patients to rebuild their health. This article will examine some of the problems that are
reported by recuperating patients, and suggest some methods for improving their recovery.
Early post-ICU care
Many patients can be discharged from the ICU to general wards without the risk of their condition
deteriorating. However, certain groups of patients, such as those recovering from acute renal
failure or discharged with a tracheostomy in situ, are at high risk of deterioration. Clear plans for
further care, specifying requirements such as daily blood tests and maintenance of a strict fluid
balance, may be passed on to ward staff by the ICU team, but not implemented. In addition, the
care of tracheostomies may be poor because of a lack of practice by ward staff. Such skills need
to be updated on a regular basis.
As a consequence, in the UK, “outreach” teams from critical care departments have been
established. Their role is not to take over patient care, but to ensure that non-ICU staff are able to
recognize when a patient is becoming critically ill, to improve their skills in caring for specific
patients, e.g. those with a tracheostomy, and to provide advice. On discharge of patients to the
general wards, the aim of follow-up for the ICU should be to either prevent readmission to ICU or,
if necessary, to ensure prompt readmission. Following the introduction of an ICU outreach service
to one hospital, the rate of survival until discharge from hospital after leaving the ICU was
improved by 6.8%, and readmission to critical care was decreased by 6.4% [5]. A retrospective
study showed a 40% reduction in cardiac arrest rate, together with an ICU readmission rate within
48 h of discharge of <2%, following the introduction of an outreach team [6]. Specialist teams
such as a tracheostomy service may also be of help.
One study examined the introduction of such a service in a hospital without an on-site ear, nose,
and throat facility [7]. It showed a reduction in discharges of patients with tracheostomy tubes
from the ICU to the wards (p=0.006) and a reduction in tracheostomy-related complications on
the wards (p=0.031) [7].
Recovery from critical illness
Physical recovery
For the majority of patients, physical recovery after discharge from the ICU is excellent. However,
for some patients, particularly those aged >50 years and those who have required a long stay in
the ICU, physical recovery from critical illness is prolonged, in some cases taking >1 year [8]. A
vast loss of lean body mass, mainly skeletal muscle, can
occur in the catabolic phase of critical illness. The loss may average 2% per day and can lead to
profound muscle weakness [9]; the diaphragm and other skeletal muscle of the respiratory
system are not protected from the muscle loss. Rebuilding of lost muscle occurs slowly and
requires both physical activity and good nutrition. Weight loss can be significant; for example, a
loss of 18% in body mass in adult respiratory distress syndrome (ARDS) patients was observed
in one study [10].
In another study, a 19–21% loss of body ass was seen in general ICU patients [11]. In addition,
some patients may develop critical illness polyneuropathy (CIPN), which is characterized by
axonal degeneration of motor nerves [12]. In severe muscle wasting following a prolonged septic
illness, upper limb wasting can be so profound that selffeeding is simply too tiring for the patient
to achieve adequate oral intake. Patients require help with feeding in this situation. Even 2
months after discharge, longer-stay patients may report difficulty climbing the stairs [13].
Similarly, walking outdoors is difficult for these patients and they tend to use a wheelchair. While
some of the physical difficulties are due to poor muscle strength and the ease with which patients
become fatigued [10], weakness of the postural muscle also results in patients having difficulty in
getting up if they fall. Consequently, they may feel insecure and frightened of falling. In addition,
patients report joint pain, most commonly shoulder pain, which may compromise their ability to
care for themselves (see Table 1 for examples of physical complaints). Those patients who
develop CIPN may take even longer to recover and need intensive rehabilitation to reduce
residual disabilities [14,15]. Patients may also develop other, more minor, physical problems such
as hair loss or bald patches where the head was in contact with the pillow. These problems have
greater significance for the patient when they are not properly explained.
Psychological issues during recovery
Until recently, little was known about the psychological sequelae of critical illness. However, with
the advent of followup questionnaires and outpatient clinics for ICU patients, it is clear that there
can be profound long-term psychological and psychosocial effects. One questionnaire study of
655 patients found a high incidence of psychosocial dysfunction, particularly in younger
individuals [16]. Other studies have shown significant levels of anxiety, depression, and posttraumatic stress disorder (PTSD) [17–21].
Agoraphobia and panic attacks can also be precipitated (Table 2). Such problems can have a
significant long-term impact on both patients’ and their family’s quality of life. Relatives of ICU
patients are also at significant risk of developing PTSD, and there is a strong correlation between
patients and their close family members with respect to the level of PTSD symptoms (Table 3)
[22–24]. The development of PTSD in family members can credibly be attributed to the recall of
their experience of the patient’s stay in ICU.
However, patients’ recall of their time in ICU and the events prior to admission is likely to be poor
[25]. A delusional memory of hallucinations, nightmares, or paranoid delusions recalled from the
time in ICU may be the traumatic event that precipitates the development of PTSD. Where
delusional memories are the only recall of ICU, with no factual recall, the risk of developing PTSD
is very high [18]. Cognitive deficits following critical illness Cognitive problems, in the form of
delirium, are common during critical illness. They are partly due to the severity of illness and the
large cumulative doses of sedative and/or opiate drugs that patients receive. However, it is only
recently that studies have begun to examine the longer-term effects of critical illness on cognitive
function, and significant cognitive deficits that may have an impact on the ability of patients to
care for themselves are now being reported [26]. At present, it is unclear whether cognitive
deficits are permanent (due to neurological damage) or may recover with time. One recent study
suggests that, although some patients improve with time, a significant number remain impaired
and may have problems with tasks such as financial management and driving [27].
Interventions to aid physical and psychological recovery
Rehabilitation
While there is increasing evidence of physical and psychological problems during recovery from
critical illness, little work has been carried out on formal rehabilitation. However, evidence from
rehabilitation programs in other patient groups, with both acute and chronic illness, shows
improvements in physical functioning and reduced psychological distress.
For example, rehabilitation programs, which may consist of exercise training, coping strategies,
and provision of information, are becoming widespread in non-hospitalized patients with chronic
obstructive pulmonary disease (COPD). These programs have been shown to improve exercise
tolerance, perception of breathlessness, and health related quality of life [28–30]. They now form
part of the recommended treatment for patients with COPD, with even severe sufferers gaining
some benefit [31]. Individuals suffering from severe respiratory impairment following an ICU
admission due to a non-obstructive pulmonary disease, e.g. pneumonia or ARDS, may benefit
from pulmonary rehabilitation, with similar improvements in exercise tolerance seen to those in
COPD patients [32]. Successful rehabilitation of ICU patients requires a multimodal program that
has both physical and psychological elements. Individualization is necessary, as patients do not
follow a set chronological pathway but may require diagnosis of differing individual physical or
psychological problems. The provision of a multimodal recovery manual program was shown to
accelerate the physical recovery of general ICU patients in a randomized, controlled study, with
blinded follow-up [33].
The program consisted of a 6-week, patient-directed rehabilitation manual that provided
information on a wide range of topics, such as the possible physical (e.g. muscle wasting,
weakness, hair loss, taste changes, and appetite loss) and psychosocial and psychological (e.g.
panic attacks, anxiety, and depression) sequelae of critical illness. It emphasized the normality of
these reactions after severe stress, and also that they are likely to settle with time. In addition, it
gave general advice on topics such as anxiety and stress management, relaxation, regaining
normal fitness levels, eating well, and sexual problems after major illness. The importance of
stopping smoking after critical illness was highlighted, and advice on cessation provided. Finally,
there was a comprehensive exercise program. An important principle of the design was that the
educational program was patient centered, with patients being encouraged to take responsibility
for their own health.
A total of 126 patients were randomized to receive either the ICU recovery manual program or
standard follow-up [33]. At 2 months after discharge from the ICU, physical recovery was faster in
patients receiving the recovery manual than in the controls; this was still evident at 6-month
follow-up (p=0.006). In addition, significantly more patients receiving the recovery manual were
able to stop smoking compared with the control group (relative risk reduction 89%, 95%
confidence interval 98–36%) [34]. This has considerable importance as it improves the chance of
lung recovery. Psychological recovery was more complex. There was a trend to a lower rate of
depression at 2 months after ICU discharge (12% vs. 25%), although this was not statistically
significant (p=0.06) [33]. More importantly, there were no differences in levels of anxiety and
PTSD-related symptoms between the groups at 6 months. Further analysis showed that those
patients who could recall delusional memories from their time on ICU were significantly more
anxious and had higher levels of PTSD-related symptoms than those who did not have these
memories, regardless of whether or not they had received the rehabilitation program. Clearly,
such patients need to be identified and referred for appropriate help.
At present, in the UK, the provision of specialist ICU rehabilitation after hospital discharge is
almost non-existent. Physiotherapists at 36 large UK hospitals were surveyed about rehabilitation
of ICU patients [35]. Although all of those questioned provided some rehabilitation on the wards,
93% of respondents felt there was a need for follow-up services to identify problems and to
ensure that patients achieved their full functional potential. A few hospitals were found to have a
specific rehabilitation team for ICU patients. ICU diaries
The patients’ lack of a concrete memory of events that occurred in the ICU can hinder their
recovery, as they have little comprehension of the severity of their illness or the length of time it
will take them to recover. The use of ICU diaries, a simple idea that originated in Sweden, has
begun to spread.
Recording an ICU stay in everyday language by staff and the patient’s family, accompanied by
appropriate photographs, is well received by patients, and is reported to help them rebuild a
memory of this episode [36,37]. The inclusion in the diary of a description of any periods of
agitation, confusion, or possible hallucinations can help the patient to identify the point at which
delusional memories may have occurred. An example of this is a patient who had an ICU memory
of being in a fire and having to be rescued by a fireman. The memory was hindering her recovery,
but upon reading the diary she found that she had been urgently moved from the ICU to theater.
It became clear to her that this was the source of her delusional memory, and, when she suffered
a flashback of the event, she would read her diary to combat it. The recording of such a diary
could be seen as a simple therapy to reduce the psychological impact of such memories, and
requires further research to examine its impact on PTSD symptoms.
PTSD
The symptoms of PTSD can be overwhelming, and failure to recognize and successfully treat the
syndrome can have a significant effect on recovery. Although the incidence of PTSD amongst
ICU patients varies with the mix of cases and may have been exaggerated in some studies, it has
a major impact on quality of life. Two recent sets of treatment guidelines emphasize the need to
screen individuals after a traumatic event and refer those with high levels of symptoms for further
professional help [38,39]. Where symptoms remain mild, “watchful waiting” is appropriate, as
many individuals find their own way of working through their traumatic experiences. Where PTSD
symptom levels are very high, referral for further professional help is appropriate. The guidelines
published by the UK National Institute for Health and Clinical Excellence point out that individuals
suffering from PTSD should routinely be provided with information on common reactions to
traumatic events, including the symptoms of PTSD, its course, and treatment [39].
The screening of ICU patients for PTSD is important, as individuals may feel the need to avoid
talking about their problems, which is itself a part of the disorder. To facilitate the recognition of
PTSD there may be a role for the use of PTSD-screening tools, such as the Impact of Event
Scale
[40],
to assess patients and their families. However, it is important that PTSD assessment is carried
out by appropriately trained individuals and is comprehensive, including physical, psychological,
and social measurements, and a risk assessment. Some individuals will be functioning
satisfactorily despite relatively high levels of symptoms, and may feel that they can cope on their
own. These individuals can be reassessed after 1 month. At present, only approximately one-third
of ICUs in the UK provide follow-up in a dedicated clinic, and it is likely that patients may initially
go to their family doctor for advice on PTSD. Education is required to ensure that clinicians who
treat patients in the community are aware of PTSD symptoms and have a high index of suspicion
when assessing post-ICU patients.
The provision of counseling, psychotherapy, or psychology services specifically for post-ICU
patients is sparse in the UK. The growth of counseling services for patients diagnosed with
cancer has arisen from the recognition of the psychological impact of such a severe illness.
Perhaps critical care providers need to think along similar lines because of the high risk of
psychological effects for both patients and families following an illness in ICU.
The inter-relationship between high levels of PTSD-related symptoms in patients and their
families points to the need for family therapy and support groups. Additionally, there may be a
need for marital and sexual counseling in circumstances where both partners are suffering from
PTSD.
Conclusion
The burden of a critical illness on both patients and their family can be extreme. In addition to
physical problems, cognitive and psychological dysfunction have a significant impact, which is
only now being recognized. Care must continue long after discharge from the ICU and a
prolonged recovery time can be expected. Some recommendations for care after discharge are
shown in Table 4. The pathway of care offered to patients must improve if their full potential for
recovery is to be realized. ICU physicians, nurses, and other professionals have important roles
to play in the management of patients after discharge.
Disclosures
The authors have no relevant financial interests to disclose.
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