Intensive care: experiences of family & friends

Receiving information and news from doctors

When a family member or friend is in ICU, people often know little about a why a person has become ill so quickly. They are dependent on doctors and nurses to tell them what is happening and what to expect. Here people talk about receiving information and news from doctors. Everyone is different and experiences ranged from those who were very happy with the information they received, and how it had been given, to those who felt disappointed. 

When the patient first became ill, many relatives and close friends didn't know what was wrong with them, why they'd become so ill so quickly or how seriously ill they'd actually been. If the patient had an accident, they usually hadn't known the extent of their injuries or how serious these had been (see 'Emergency admissions'). When the patient was being seen in Accident and Emergency, many had waited desperately for any news from doctors. Before the patient had been admitted to ICU, they'd usually spoken with a doctor, learnt how ill the patient had been and that the illness had been life-threatening. Many still hadn't known, at this stage, exactly what was wrong. Once the patient was admitted to ICU, most people had visited them every day and waited for news on whether the patient would survive and, if they did, whether they'd be left disabled, brain damaged or paralysed. In the early stages, even the doctors hadn't been able to answer all these questions and the wait had been extremely traumatic. 

Once the doctors started getting test results back and seeing how the patient responded to treatment, they'd been able to give some information to relatives and close friends, though often very little in the early stages. Many people said they felt doctors had been honest about what they'd known and hadn't known and had explained as much as they could. Most had been happy with the way medical information had been explained to them by doctors and felt it had been given honestly, clearly and compassionately.

Some said staff in ICU did everything they could to make the patient comfortable and help them improve. One woman said that a special bed had been ordered from another hospital for her critically ill friend. Although her friend had started improving and hadn't needed it, it reinforced for her that the ICU doctors had done everything they could to help the patient recover.

One father and daughter praised the advice they'd received from a doctor, who recommended they stay as emotionally balanced as they could amid the extreme highs and lows when patients continually improve and deteriorate. Most people said they'd appreciated clear communication, empathy, and news given in a direct, honest and compassionate way. They'd also liked the doctors who'd been approachable. 

A few people who'd worked in the health field felt doctors had explained information in more detail once they'd learned they had a health background and were familiar with medical terms. 

Some people said they'd been happy with the care the patient had received but hadn't always understood what doctors had told them about the patient's illness. They felt doctors had sometimes used medical or technical terms without explaining them. A few said they'd been told the patient had been 'stable' or had 'a comfortable night' but wondered what that had really meant. Some said, if they hadn't understood information from doctors, they later asked nurses, who explained it more clearly and had more time to go into detail (see 'Nursing care'). 

A few people said they'd believed the patient had been improving only to learn hours or days later that the ill person had deteriorated again and could die. This had come as yet another shock because they'd assumed the worst had been over. One woman said that doctors had told her that her son was 'stable' when he was critically ill. She'd assumed he'd survived and had been extremely shocked when, a few days later, they'd told her he could still die. She also hadn't realised until much later that he'd been on a life support machine or ventilator and would have died without it. 

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Some said the patient had head or brain injuries and doctors gave them information about the patient's progress at every stage. They'd been told on several occasions that it had been too early to predict whether the ill person would be brain damaged and that recovery from head injuries was often long and slow. Two couples, however, both of whom had sons with brain injuries, had been disappointed in the attitudes of some doctors. One couple felt they'd been asked by a doctor to decide whether they'd wanted their son's life support machine switched off because he hadn't been responding and would be left in a persistent vegetative state (PVS). This is a condition in which the patient is severely brain damaged and totally unresponsive to any of their surroundings or other stimuli. At the time of the interviews relatives could not give consent but could express an absence of objection (assent) to a procedure being performed, unless they'd had power of attorney. Treatment decisions have to be based on medical evidence and taken in the best interest of the patient (see our section on family experiences of vegetative and minimally conscious states for more on 'best interest' decisions.)

Another couple said they were told that their son wasn't responding, would be brain damaged and that they shouldn't raise their hopes about progress. Both of these couples were disappointed when doctors dismissed their claims that their sons had shown signs of awareness, and both had felt it had been too early to predict how they'd recover after a brain injury. In both of these cases, the critically ill person recovered and was now living a healthy and full life. Like a few others, they felt parents know their children best and can often pick up things about them that other people can't. 

In the early stages of a patient's critical illness, relatives and close friends are often under extreme stress as they wait by the patient's bedside for any news or signs of improvement. Under such stress, it is difficult to retain all the information given and, even what little information is given by doctors at the time, may feel inadequate or negative. One person we spoke to was an ICU doctor himself. When his father became critically ill, it reaffirmed for him just how important it was for doctors to communicate clearly, honestly and to repeat information because relatives and close friends were often under too much stress to retain information.

In the early stages, emotions are often running high and relatives and close friends may be clinging to any signs of hope and progress. Some people praised doctors who'd told them about the person's illness frankly, leaving no room for misunderstanding. 

Some felt that a frank explanation had often felt too harsh, direct or negative. Others praised the skill and expertise of doctors but felt they didn't communicate news and information in an understanding or sympathetic way. Yet others had felt that the doctors communicated news to them in such negative terms, they'd been left with very little hope. Many felt that some doctors were better at communicating news than others and that some had been more negative than others, often 'painting a worst-case scenario'. One woman said she'd been very happy with the care and explanations doctors had given her about her husband's illness but one doctor, a locum, had been extremely negative and told her that her husband wouldn't survive. This had been very upsetting for the whole family, particularly as none of the other doctors had shared or expressed that opinion. Some said they'd been pleased with the way senior doctors and nurses had kept them informed and updated but felt some of the trainee doctors had been less skilled at communicating news or relating to them as people. 

One participant, an ICU consultant whose father had been critically ill, said that ICU doctors have to strike a balance between giving information to relatives without raising their hopes at a time when the patient's survival is uncertain and could go either way. Often, doctors err on the side of caution rather than optimism.

Some people said they'd been confused at what they'd felt had been conflicting information from different doctors. Others said the news had seemed conflicting but, because the patient had deteriorated and improved so often, they hadn't been able to tell if this information had been confusing or the situation itself, which had been extremely uncertain and changeable. 

One woman felt quite angry because she'd been given conflicting information about whether her husband had MRSA. This is a bacterial infection that mainly occurs in people who are already ill in hospital and can be difficult to treat

One woman's son-in-law and daughter had a car accident; he was in ICU and her daughter was on a ward. She said that  communication between ICU and ward staff had been poor and her daughter had been given very little information about her husband's condition. When one particular consultant came on duty, however, this situation improved immensely.

Everyone is different and some people said they'd wanted as much information from doctors as possible while others hadn't. Some felt that that information was rarely volunteered but was given when asked. Some people had been disappointed by this. Others said they hadn't asked for much information, had trusted the staff and might not have understood the details anyway. Some people said they'd told doctors to give them as much information as possible and for them to be honest with them, whatever the news. One of these people was surprised when she spoke to other visitors in the relatives' room who didn't have much information about their patient at all. 

One woman said she'd been volunteered information but, because she'd felt it had been extremely negative and too soon under the circumstances, she hadn't wanted it. 

A few people said that, although they'd been happy with the information and news doctors had given them, with hindsight they'd wished they'd been more assertive about tests when the person had first shown symptoms because this might have prevented them becoming critically ill. One woman wished she'd insisted doctors had taken a chest x-ray sooner because her partner might not have become critically ill if he'd been treated earlier. Other people wished they'd insisted that the ill person see a GP sooner than they had (see 'Emergency admissions').

Last reviewed August 2018.


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