Common problems after ICU

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Chapter 8 Common problems after ICU

Until recently, an intensive care unit (ICU) stay was deemed successful if a patient survived to go to the ward. No consideration was taken of the patient dying on the ward or soon after leaving hospital or indeed if the patient went home with an appalling quality of life.

Mortality figures for patients leaving our own ICU recently are shown in Figure 8.1.

Figure 8.1 Mortality rates for leaving the intensive care unit (ICU).

A Kings Fund report ¹ in 1989 concluded that it was necessary to look at the morbidity following critical illness as well as mortality: ‘There is more to life than measuring death’.

Publications such as that of the Audit Commission (Critical to Success)² and that of the National Expert Group³ (Comprehensive Critical Care) have supported the development of follow-up for patients following a stay in intensive care. In 2007, the National Institute for Clinical Excellence (NICE) began to take an interest in the rehabilitation of critically ill patients and it is hoped will make recommendations to facilitate the introduction of follow-up programmes in all hospitals looking after critically ill patients.

In Reading, a follow-up programme has been ongoing since 1993. Until recently the rehabilitation of patients after a critical illness has fallen between too many stools. Following multiorgan dysfunction, it is difficult to categorise a patient to an individual specialty such as cardiac, respiratory or the stroke rehabilitation teams. Family doctors often have difficulty taking on the complexity of these patients, with the result that they are denied vital advice and assistance and lack an advocate with ‘teeth’ to ensure timely help.

SETTING UP A FOLLOW-UP SERVICE

Funding such a follow-up programme has posed local problems in many trusts. The service in Reading was initially approved and funded by local then regional audit committees.

The service is staffed by a follow-up sister who spends most of her time in this role helped by a staff nurse and an ICU consultant for the clinics held as a formal outpatient clinic 2/3 times monthly.

Patients who were in ICU for more than 4 days are seen in clinic at 2 months, 6 months and 1 year after discharge and, occasionally, we see patients who have been in ICU for a shorter time period and we also see referrals from other hospitals where follow-up isn’t happening. It is important to identify clerical and IT support, and to achieve good collaboration with other hospital departments and general practitioners (GPs) to ensure patients do not make unnecessary journeys to the hospital, by trying to coordinate their visits and ensuring that transport is organised where necessary. Very often, patients will voluntarily come from long distances if they had initially been admitted from other geographical locations – out-of-area transfers.

The logistics of running the service include arranging specific tests that may be required for the visit, such as pulmonary function tests, swabs for methicillin-resistant Staphylococcus aureus (MRSA), blood/urine for creatinine clearance. There may be special tests such as magnetic resonance imaging (MRI)⁴ for patients who had a tracheostomy during their stay in ICU.

The service in Reading costs £30 000 annually which, in the context of the bigger picture (£4.5 million budget for our ICU), is a small price to pay (Figure 8.2). An unexpected bonus is that the clinic is often seen by the patients as a convenient place to make donations to the ICU.

Figure 8.2 Costs of running a service.

SPECIFIC PROBLEMS POST-ICU

The range of problems seen after intensive care is vast and ranges from nightmares and sleep disturbance through to ill-fitting clothes. Many of the problems are very specific to the individual but there are also recurrent themes. Flashbacks are common, as are taste loss, poor appetite, nail and hair disorders and sexual dysfunction.

There are several quality-of-life tools used in follow-up studies (Table 8.1). Objective measurements may be inappropriate because they look at aspects such as return to work: often, patients in their 50s may not return to work after a traumatic episode, including ICU, and subjective measures would be more applicable, such as Perceived Quality Of Life (PQOL).

Table 8.1 Quality-of-life tool examples

Objective
QALY	Quality of Life tool⁵
Subjective
HAD	Hospital Anxiety and Depression⁶
PQOL	Perceived Quality of Life⁷
EuroQol	‘European’ tool⁸
SF 36	36-item short-form survey⁹

TRACHEOSTOMY

Since percutaneous techniques performed by intensivists started to replace surgical tracheostomy in 1991, we have seen an increasing number of patients tracheostomised earlier in their ICU stay.

The long-term sequelae have been assessed by lung function tests, nasoendoscopy and MRI screening (Figure 8.3). There are minor cosmetic problems, such as tethering (Figure 8.4). Tethering is easily dealt with in ear, nose and throat outpatients under local anaesthetic.

Figure 8.3 Assessment of long-term sequelae.

Figure 8.4 Tethering.

More difficult to manage is tracheal stenosis, defined as a 15% reduction in tracheal diameter. However, there have only been two cases to date. These were seen in the first series of 30 cases.⁴

MOBILITY

Even in the absence of trauma, patients can expect to need 9 months to 1 year to regain full mobility. This is usually due to a mixture of joint pain, stiffness and muscle weakness. In one study,¹⁰ the duration of ICU stay was associated with mobility problems probably associated with loss of muscle mass. If questioned, patients will often report climbing stairs on all fours and descending on their bottoms (Figure 8.5). Muscle wasting can present as a severe localised problem.

Figure 8.5 Climbing and descending stairs.

This may be associated with critical illness polyneuropathy (CIP),¹¹ which not only prolongs ventilatory weaning but frequently both complicates and delays rehabilitation. Muscle relaxants have been implicated in the development of CIP¹² but have not been shown to be statistically significant in terms of delayed weaning of intermittent positive-pressure ventilation and duration of stay in ICU.¹³

Until now, there have been no specific rehabilitation programmes for patients recovering from critical illness, although rehabilitation programmes for heart attack, stroke and respiratory disease are well established. A three-centre study has shown that a self-help physiotherapy guided rehabilitation exercise programme will speed up physical recovery after intensive care.¹⁴

It is important for a member of the team to try and spend time with patients at their homes to assess their special needs and liaise with the GPs, district nurses, community physiotherapists and occupational therapists.

SKIN

Patients complain of a variety of non-specific disorders, including hair loss and nail ridging. Severe pruritus used to be common and not amenable to treatment and was traced back to the use of high-molecular-weight starch solutions in ICU. Described in 2000,¹⁵ in 85 cardiac surgical patients, pruritus was absent in the 26 patients who did not receive starch, but there was a 22% incidence in the 59 patients who did receive starch. This is now supposedly less of a problem with the newer starches.

Colonisation with MRSA often persists for up to 9 months or longer (Figure 8.6). It is common to hear that patients are being treated as ‘lepers’ by their own family.

Figure 8.6 Colonisation with methicillin-resistant Staphylococcus aureus (MRSA).

SEXUAL DYSFUNCTION

Any patients who estimate their sex-life activity to be less active than before ICU admission are deemed to have sexual dysfunction.

In a group of 57 patients,¹⁶ there was a 39% incidence of sexual dysfunction, although in 4 patients, sex life had improved. Sexual dysfunction improves with time, from a frequency of about 26% at 2 months post-ICU down to 16% at 1 year.¹⁷ Sexual dysfunction is often thought to be a psychological problem but, interestingly, following severe burns, it has been reported that there is no correlation between the incidence of posttraumatic stress syndrome and sexual dysfunction.¹⁸ Nevertheless, withdrawing sexual intimacy because of fear of failure can damage relationships. Often sexual dysfunction may go untreated because people are too embarrassed to mention the problem when they have recovered from a life-threatening illness.

Sexual dysfunction affects both men and women. In men it usually manifests itself as impotence or inability to maintain an erection sufficient for satisfactory sexual activity. For management guidelines for erectile dysfunction, see Ralph and McNicholas.¹⁹

In investigating sexual dysfunction, it is important to eliminate causes such as the use of drugs e.g. L-dopa and H₂-blockers and certain types of surgery (aortic aneurysm) or trauma/radiotherapy to the pelvic region. The patients may be diabetic.

Treatments available include intracavernous or transureteral alprostadil or oral Viagra. Patients with cardiovascular dysfunction have to be carefully assessed before being given Viagra. Non-pharmacological therapies include the use of vacuum devices and inflatable penile prostheses.

In females, sexual dysfunction may occur due to surgery or trauma to the pelvis. More commonly, there is a reduction in desire. Various lubricating gels can be used. As yet, the role of Viagra for women has to be determined. In 127 patients asked to fill in a questionnaire while attending the clinic, the incidence of sexual dysfunction was 45%.²⁰ There was no link with gender but there was a close association with posttraumatic stress disorder (PTSD).

PSYCHOLOGICAL PROBLEMS

Most patients admitted to ICU have no warning of their admission (emergency admission) and these are the patients who are very much at risk of psychological sequelae post-ICU.

The majority of patients do not have a structured memory of their ICU stay. Those who do may have upsetting memories which may be relatively innocuous, such as being thirsty and hearing a can of Coke being opened, or of a far more profound nature.

The story of ‘torture’ experiences is not unusual when you talk to an ex-ICU patient. The psychological impact of the experience may be formidable and may be resented by the patient. The memory of hearing that a patient is about to be ‘bagged’ was interpreted as being put into a body bag rather than a physiotherapy manoeuvre and the use of a tape measure was interpreted as being measured for a coffin and not as part of the cardiac output measurements. Previous studies demonstrate a high incidence of anxiety, depression and posttraumatic stress.²¹ It is common for patients to have memories of being trapped, of being unable to move easily, of being unable to see what is happening and of feeling intensely vulnerable. The anxiety of impending death is also reported.

Below is a typical nightmare of one of our patients:

I was in a tunnel knee-deep in mud. It was pitch black, but I could see light at the end. I felt a cold chill on my neck as if someone was breathing down my neck. I thought it was the grim reaper, I knew I had to get to the light.

There may be several reasons for these experiences (Table 8.2). There is a common belief that, when on ICU, it is better that a patient does not remember anything. However, it is increasingly realised that false memories or delusions during an ICU stay can have a significant impact on psychological recovery after ICU ²² and factual memories of ICU may reduce anxiety.²³

Table 8.2 Psychological problems

Illness

Sedation technique

Withdrawal

No communication aids

Lack of clear night/day

Continuous noise of alarms

Sleep disturbance – lack of rapid-eye-movement sleep

It now seems likely that delusional memories of ICU and nightmares are associated with PTSD.

PTSD is a normal reaction to severe stress and is similar to a grief reaction to bereavement. It occurs in about 1% of the population and increases to 10% in victims of road traffic accidents and 65% in prisoners of war. About 15% of patients have the typical disorder post-ICU. In those with adult respiratory distress syndrome, the incidence increases to 27.5%.

PTSD is the development of characteristic symptoms after being subjected to a traumatic event. PTSD can be triggered by any memory or mention of something to do with the traumatic event and is characterised by intrusive recollections, avoidance behaviour and hyperarousal symptoms.²⁴

Chronic fatigue syndrome (CFS), previously known as myalgic encephalitis (ME), is thought to describe the condition of many patients post-ICU who have had a period of prolonged inactivity. CFS is diagnosed by the presence of fatigue at 6 months post-ICU with impairment of daily living, social and leisure pursuits and with no medically significant cause of the fatigue. There is no doubt that a graded exercise programme is of benefit to aid physical recovery in such ICU patients.¹⁴ Drugs such as fluoxetime (Prozac) do not seem to benefit such patients, even though there is a great temptation to use antidepressants in these patients.²⁵

Various strategies to deal with the psychological sequelae of ICU stay have been tried.

DURING ICU STAY

• There is no doubt that continuous intravenous sedation has been identified as an independent predictor of a longer duration of mechanical ventilation, ICU stay and total hospital stay.²⁶ Kreiss et al.²⁷ demonstrated that, in 128 adults, ICU stay was reduced from an average of 7.3 to 4.9 days by the daily interruption of the sedative regime. This regime may have had an impact by reducing PTSD as the patients are more likely to have some recollection of their ICU stay, thus helping them to understand the reasons for the need for their prolonged rehabilitation period. Concerns have been raised as to the type of sedative agent used in ICU. It is well known that etomidate may cause an excess in mortality in trauma patients in ICU²⁸ and propofol may do the same in head-injured patients at doses greater than 5 mg/kg per h.²⁹ The decision to use benzodiazepines such as midazolam increasingly may be associated with dependence. This has been studied; 21 out of 148 ICU patients were discharged home on oral benzodiazepine, of whom 10 were still taking them at 6 months post-discharge having not been on them pre-ICU.³⁰ Lorazepam has been promoted as the benzodiazepine of choice for sedation in ICU³¹ and is preferred by a task force in the USA for adult patients in ICU.³²

• Encouraging the use of communication aids, involving speech therapists particularly in patients with tracheostomies ³³ and training more nurses to lip-read can be invaluable.

• When building or modifying ICUs, remember that windows and 24-hour clocks visible to patients may help re-establish circadian rhythms and the use of curtains to ensure patient dignity should not be forgotten. There has been some interest in appropriate colours that should be used in ICU décor, avoiding colours that cause alarm in the animal kingdom, such as red, yellow and black.

• Use of aromatherapy and massage whilst patients receive their ICU does seem to reduce stress levels and encourages contact between the patient and relatives, reducing the feeling of isolation.³⁴

POST-ICU DISCHARGE

Visiting patients on the ward post ICU discharge and giving them an information booklet helps to prepare them better for the long rehabilitation process ahead.

As well as three ICU follow-up clinic appointments in the year after their discharge, patients with PTSD are encouraged to visit the ICU and, with the help of a diary, reconstruct the lost period of time in the patient’s life. We are considering the use of photos of patients whilst they are on ICU to help them understand how ill they actually were.

CONCLUSION

It is important to assess patient satisfaction or dissatisfaction with their follow-up. This may be audited by questionnaire during their third visit to the follow-up clinic at 1 year post ICU discharge.³⁵

The findings have been reassuring. The response rate was 87 out of 88 patients and all but one of the 87 patients found benefit from the clinic, particularly because questions could be answered (often their GP could not help). Other findings are as follows:

• 28% benefited from referral to other specialists

• 26% had PTSD counseling

• 25% felt they derived some benefit from returning to the ICU and having a diary written for them

• 48% felt they were helping the staff of the ICU

The comments were very useful, e.g.:

• ‘You helped me retrace the time lost whilst under sedation’

• ‘It was frightening leaving ICU to go back to the ward. My wife slept next to me in the ward on a mattress on the floor’

There is no end to the surprises and unexpected problems that arise in patients after intensive care. It is not unusual to see patients who were initially deemed inappropriate for surgery and ICU who have done well and who on questioning have an excellent quality of life. It is only by the ICU specialists undertaking to follow up patients that we can assess the appropriateness of our decision-making and treatments.

In the UK follow-up clinics were recommended by the Audit Commission in 1999 (Criticial to Success)² and in the Comprehensive Critical Care document in 2000³, yet only a small number of hospitals have been able to fund such a service. Griffiths et al.³⁶ demonstrated that clinics are not widely established and show marked heterogeneity. Of those established, only two-thirds are funded and most do not have a prenegotiated access to other outpatient services. It is hoped that NICE will support their growth and that the National Outreach Forum will support the idea that follow-up will be one of the quality indicators of a hospital’s resolve to set up a comprehensive service for patients who have been critically ill. Meanwhile there is an exponential increase in literature related to outcome following critical illness as health economists and intensivists try and make some sense out of the cost-effectiveness of intensive care.³⁷^–⁴⁰ Further studies are under way. The DiPEx study seeks to obtain a variety of patient and relative experiences of critical care (www.dipex.org). I-CANUK is a website that is being set up to provide a forum and voice for those involved in patient care following intensive care discharge and to support research into potential therapies following critical illness. The results of the PraCTICaL (Pragmatic Randomised Controlled Trial of Intensive Care Follow-up clinics in improving longer-term outcomes trial from critical illness) should be available by the end of 2008.