Intensive care: Patients' experiences

Making sense of what happened

Critical illness can have a huge impact on a person's life, both physically and emotionally, as can the experience of being in an intensive care unit, including nightmares, hallucinations, confusion, not knowing what has happened and how much time has passed. Fear, isolation and a loss of control were common feelings among people who were ill or injured in intensive care, and it was often when they were back home that they had time to reflect on what had happened. For while the time in hospital was very much centred around their physical recovery, the time at home was an opportunity to take stock and heal emotionally. For many, making a good recovery also included making sense of what had happened during their stay in intensive care. Here people who were admitted to intensive care as an emergency talk about making sense of what happened. 

Everyone is unique and deals with major life events in different ways. When they regained consciousness in intensive care, though everyone wanted basic information about what had happened and their recovery, how much more they wanted to know after that varied (see 'Information: for people admitted to ICU for emergency treatment'). Some people wanted to know as much as possible with many details. Others wanted to know very little, preferring to focus on looking ahead.

Wanting to know as much as possible

Some people were sedated or unconscious in ICU for up to a month and wanted to know exactly what had happened in the time they'd 'lost'. Some had 'wanted to know everything', starting from when they became aware and orientated in intensive care. Others said they asked relatives lots of questions once they were back home. Many said that, although they couldn't do anything about the days, weeks or months they'd lost, knowing as much as they could helped explain where the time had gone and restored some sense of control. Different people wanted to know about different details and at various stages of illness and recovery' what had happened leading up to intensive care, when were they admitted to ICU, what did they do when they came round, what did they say, who had visited?

Making sense of dreams and hallucinations also mattered to some, particularly finding out what had been real or hallucination caused by the illness or treatments they'd been given in intensive care. For most people making sense of what happened was a gradual, fragmented process rather than one occasion or stretch of time when they 'pieced it all together'. Relatives, health professionals during and after their hospital stay, as well as ICU diaries all contributed to what one man called fixing 'the jigsaw' of his life.

Many people wanted to know how close to death they'd come, though found it an extremely difficult question to ask and subject to talk about. One woman said she 'needed to know' and asked her doctors. She also kept her own diary and wanted to regain a sense of control over her life.

Some said they had discussed their intensive care experiences over and over again with family, one woman saying she and her sister had talked the subject 'to death'. Others wondered if relatives had got 'fed up' with all their questions. Yet others recommended asking as much as possible because otherwise questions could 'play on your mind' later. One man consulted a medium to help him make sense of his dreams during intensive care.

National Institute for Health and Care Excellence (NICE) recommends that when you have left the hospital:
“If you needed structured support while you were in hospital, you should have a meeting with a member of your healthcare team who is familiar with your critical care problems and recovery. The meeting will be to discuss any physical, sensory or communication problems, emotional or psychological problems and any social care or equipment needs that you might have.
If you are recovering more slowly than anticipated, or if you have developed any new physical or psychological problems, then you should be offered referral to the relevant rehabilitation or other specialist service.” (NICE CG83 2009)

Focusing on the future

Some people said that, once they were back home from hospital, they focussed on recovery and 'moving on' from what had happened in ICU. One young woman, who had had an emergency hysterectomy, said she didn't 'try to figure it all out' but focused on her recovery and all she had to look forward to.

One man said a part of him wanted to 'know every detail' but another part to just 'move on'. He recommended discussing hallucinations with relatives to make light of them. Another said that, although he was 'curious' about what had happened, he had no 'burning or consuming desire' to know all the details.

Last reviewed May 2015.

Last updated November 2012.

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