Intensive care: Patients' experiences

Information for people admitted to ICU for emergency treatment

Most people admitted to an intensive care unit have had an emergency illness, accident or surgical complication (see 'Reasons for admission: emergency admissions'). Before their own experience, many had known little about intensive care, including why people are admitted to ICU or any of the treatments they are given. Because they were unexpectedly and critically ill, there was little or no time for them to think about information or ask questions. Many of those who were sedated remembered little leading up to sedation and, when they came round, their memories were often hazy or confused. Once they were more aware, some people wanted to ask questions and find out as much as possible. People also wanted information at different stages of illness and recovery and on different topics. Others said that the only information they really wanted was to know if they were improving.

Asking questions in ICU
Once they were well enough to take information in, most people wanted to find out basic information about what had happened to them. This included what was wrong with them, how long they'd been in hospital and when they would recover. Both health professionals and relatives talked to them about this. Often it was relatives who were important in helping to answer these basic questions.

Many people said that they were told about their illness when they were in intensive care but hadn't been able to remember what was said to them at the time. They stressed the importance of having information repeated to them again and again. Some hadn't been able to ask any questions when they came round, because breathing equipment made it impossible to talk. A few thought that their families had been told much more about their illness than they had.

Many people wondered why they were so weak and had been told, often by physiotherapists, about the muscle loss they'd had after being critically ill and immobile in ICU.

Finding out about treatments in ICU
Some people recalled that nurses and other medical staff in ICU had told them about the procedures they had to perform and why these were needed. Others said, with hindsight, that they would have liked to have been told more about these. Some people wondered if they had been told at the time but hadn't remembered because of their physical and mental state.

Most people had been happy with the information they were given and said that doctors and nurses explained medical information clearly and answered questions honestly. Sometimes people acknowledged that their questions couldn't be answered and medical staff were honest about that. Some said they trusted the expertise of doctors and nurses and asked few questions about their illness and treatments. Others wanted as much information as possible in order to regain a sense of control. Most said they could understand and remember information better, when they'd improved somewhat and had their minds were clearer.

Being prepared for leaving ICU
Some people who have been in ICU go directly to a general ward when doctors consider them to be well enough. Others go to a High Dependency Unit (HDU). Some people who were transferred from the ICU to a HDU said they would have liked to have been better prepared.

"Before a patient is discharged from intensive care, s/he should be given another health check (called a short clinical assessment) to identify:
  • any physical or psychological problems
  • the likelihood of any problems developing in the future, and
  • their current rehabilitation needs
  • If the health check shows that the patient could benefit from more structured support, s/he should have a more detailed health check (called a comprehensive clinical assessment) to identify their rehabilitation needs"  -The National Institute for Health and Care Excellence (NICE) CG83 (2009)

Most people we spoke to felt completely unprepared for the transfer to a ward, even when they were told that there would be fewer nurses per patient. Some couldn't remember being told about this. Others noted that their relatives would have liked more information about what to expect on the ward (see 'The general ward: care and environment').

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Information about recovery
Most people said they were completely unprepared for how long it took to recover. Some of them wished they'd been told more about this when they were discharged. Others said they had had all the information they needed from doctors, nurses and leaflets, but still didn't expect recovery to take as long as it had. Some hadn't believed what doctors had told them about the recovery time and a few didn't want to accept this information.

Some relatives said they would have liked more information on what to expect when a person returns home after being critically ill in ICU (see 'Impact on family').

Looking for information

Once they were home and well enough, some people wanted more information about their illness and sought it from various sources: doctors, nurses, family, the internet, leaflets.

One woman was unhappy with her tracheostomy scar and wondered if there might have been an alternative to a tracheostomy that left no scar. Like others, she wondered about the chances of her illness (pneumonia) recurring and now felt particularly cautious of any cold-like symptoms. A few people noted that information they'd received about treatments was sometimes inconsistent and this could be confusing and worrying.

ICU diaries
Most people who had been given diaries of their ICU stay, either when leaving the hospital or at a follow-up appointment, said they learnt a lot more about their stay after reading these. This included information  about the illness, treatments, changes and improvements, family reactions and visitors.

Last reviewed May 2015.

Last updated November 2012.

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