Intensive care: experiences of family & friends

Signs of improvement and progress

For patients in intensive care there may be a period of uncertainty as to whether that person will survive. During this time friends and family will look desperately for signs of improvement. Here relatives, partners and close friends talk about waiting at the patient's bedside for signs of improvement and progress. 

Waiting for news and signs of change had been an extremely stressful time in which many people had felt helpless. Gradually, most patients had shown signs of improvement and relatives and close friends had been overjoyed to learn that the patient would survive. Patients remain in ICU for varying lengths of time, depending on the nature of the illness. Some need surgery, others are treated only with drugs. For most of the time the majority of patients are unconscious. This may be because of a head injury or it may be that they have been heavily sedated to get them through a period that would otherwise be distressingly painful. Because they are unconscious they have to be given artificial respiration either by an endo-tracheal tube (a tube inserted into the windpipe from the mouth or nose to provide a passageway for air) or through a tracheostomy (an opening through the neck into the windpipe). If the event that takes patients into ICU is unexpected, they may not be aware of their condition until they regain consciousness (come round). Some may remember pain, others don't, but it is common for patients not to remember what happened. When they come round in ICU they may not know where they are or how ill they've been. This is due to the illness as well as medications (see Intensive care: Patients' experiences)

When the patient had had severe head or brain injuries, some people said that it had been extremely harrowing waiting to find out if these had affected their memory and abilities to do normal daily activities. Many people waiting for the patient to regain consciousness had worried about what the future had held for the ill person and about coping themselves if the person needed full-time care. 

Many people described their concern as the patient began to regain consciousness but seemed to be totally confused and deluded, and in some cases extremely agitated. In most cases where a patient had head or brain injuries, nurses had been able to reassure them that it was usual for people in the early stages of recovery to be agitated, often uncontrollable and very confused.

Doctors tended to be very cautious in their predictions of how much recovery or permanent damage could be expected. It was only some time after patients had regained consciousness that doctors had been able to ascertain, gradually, whether the patient had been left brain damaged or disabled in any way. Sometimes, although a very negative prediction had been made, the patient surprised everyone by making good progress. 

One woman explained how anxious she and her daughter had been waiting to find out whether her son-in-law had been brain damaged after a car accident. At this early stage, any sign of awareness or recognition in the patient had been encouraging. 

Another woman described how her son had started recovering slowly, after having head injuries and, day by day, been able to do a bit more for himself. Over time, he was able to eat, recognise people, walk and talk. 

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Intensive care patients receive many medicines and some of these and even the illness itself can cause nightmares and auditory or visual hallucinations. Some people had been very worried when the patient had come round but been extremely confused or hallucinating. They'd been concerned about their mental health and whether the hallucinations would be permanent. This period of time could be almost more difficult than when the patient had been unconscious. Reassurance from medical staff that this was normal and didn't suggest there had been permanent damage, helped them through. Some had wished they'd been told more about hallucinations earlier as this would have helped them feel less worried. One woman, who'd been particularly concerned because her husband had been hallucinating for some time, said doctors had given him a brain scan to reassure her that his illness hadn't caused any brain damage. One woman was so disturbed by the memory of her hallucinations that nurses took her back to visit the ICU so she could sort out what was fantasy and what was reality.

Many relatives and close friends had sat at the patient's bedside for days or weeks, anxious and uncertain whether the ill person would survive. When the patient had regained consciousness and had no permanent brain damage, this had been an extremely reassuring and happy time for them. It had also been a huge relief when patients had been able to breathe for themselves and when, little by little, they'd needed less support and equipment. Most ICU patients are extremely tired and weak when they come round and this weakness can happen even after a few days of being ill and motionless in intensive care. The muscle wastage, weakness or neuropathy ICU patients often have makes many normal daily activities extremely difficult. Although its causes are poorly understood, it is estimated that 33 - 57 percent of patients who stay in the ICU for longer than 7 days could get neuropathy.* Exact data is hard to obtain as variation exists in defining the condition. Many people had been reassured and pleased when the patient had gained enough strength to move their fingers, grip and show other signs of improvement, such as smiling and squeezing hands. 

Many recalled how happy they'd been when the ill person had been able to move their arms or legs and had tried to communicate, often with the help of a board and letters

One woman's partner had been sedated for three and a half months, which is very uncommon. She said she'd been overjoyed when he came round. He remembered his car accident and was surprised to see how much their baby daughter had grown.

Often, when patients are able to breathe on their own, they are usually transferred from ICU to a High Dependency Unit (HDU) or a general ward. HDUs, sometimes called step-down, progressive or intermediate care units, are for patients who need more intensive observation, treatment and nursing care than is possible in a general ward but slightly less than that given in ICU. The ratio of nurses to patients may be slightly lower than in ICU but higher than in most general wards. Some hospitals have a combined ICU and HDU or a certain number of beds in ICU given to HDU patients. In these cases, although a patient is not moved to another ward, the level of care is slightly reduced as the patient is no longer in such a critical state. Some patients had been concerned about moving to HDU because they'd felt too weak to do anything for themselves. One woman had been particularly anxious about her son moving to HDU because he had a rare muscle condition and could do very little for himself even when he was well. 

For most people: moving to HDU was seen as a positive step in the right direction. Most had also been extremely relieved and happy when the patient had become more alert as time had gone on. One woman said that, because of the severe head injuries her brother had, doctors hadn't known or been able to predict if he would ever fully recover. He hadn't recognised anyone when he'd first come round in ICU but in HDU he started remembering who people were and, gradually, began to be able to talk. Although he'd been extremely confused and weak, he was later transferred to a local hospital where he could have intensive rehabilitation to help him become independent again. 

Many described how the ill person had improved daily in HDU and had gradually started to regain their physical strength: moving arms and legs, being hoisted and sitting in a chair, eating semi-solid food and being able to go outside in a wheelchair. Some described how, with the support of physiotherapists, the ill person had been helped with walking, firstly using a Zimmer frame or a stick and eventually taking steps without any aid at all. 

Once they'd become strong enough, some patients had needed to have surgery to help them recover further. One woman explained that her husband had to spend two weeks in HDU waiting for a bed to become available in another hospital where he would have an operation. Although he'd been making good progress, he'd felt depressed about having to wait in HDU rather than at home. Another woman said her best friend became profoundly depressed after she was first transferred to HDU and began to realise what had happened and how disabled she was. She soon started making good progress and had another operation and gradually began to be able to walk using a Zimmer frame.

Some hospitals in the UK don't have HDUs and, in these cases, people are usually transferred directly from intensive care to a general ward. Some people said there'd been no HDU in the hospital their relative or friend had been in and they'd been disappointed in this. Many felt that the patient hadn't been ready to have such a reduction in nursing care and support and that the move from ICU to a ward was too big a step for patients who'd been so ill (see 'The ward environment and nursing care'). For others, the patient's transfer to a ward had been seen as a step closer to recovery and going back home, and they described the improvement the patient had made while on the ward.

*Johnson, KL (Apr–Jun 2007). "Neuromuscular complications in the intensive care unit: critical illness polyneuromyopathy.". AACN Advanced Critical Care 18 (2): 167–80; quiz 181–2. doi:10.1097/01.AACN.0000269260.99169.70. PMID 17473545.

Last reviewed August 2018.
Last updated May 2015.


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