When a loved one is in intensive care, having information about their condition and progress can help reduce feelings of uncertainty, fear and being out of control. Here people talk about the information they received, wanted or looked for while the patient had been critically ill in ICU.

Most people wanted information on different things at different stages. When the patient had first been admitted to ICU, their main questions centred on the patient’s survival and whether they’d be left disabled, brain damaged or paralysed after critical illness. This was often a question doctors were unable to answer because they had to wait to see how the patient responded to tests and treatments first. For many, waiting for this information had been traumatic and, at this stage, it hadn’t mattered why the patient had become ill. All that had mattered was that he or she survived.

One man’s partner had pneumonia and a rare infection but to him all that had mattered was her survival. Another said he and his family just wanted his critically ill father to survive when he was in ICU and only learnt at a follow-up appointment some weeks after his father’s discharge from hospital that he’d had a rare form of pneumonia.

For most people this had been their first experience of intensive care. A few, who’d worked in the health field, had known a bit about ICU treatments and why patients are admitted to intensive care. One man was an ICU doctor so was very familiar with the intensive care environment and treatments. One man, a retired teacher, had known what to expect of intensive care because he’d visited a friend of his in ICU before, who was admitted after an accident. Another said his wife had been in ICU four times because of bowel related problems. Many said nurses had given them information about the ICU environment when the patient had first been admitted as well as information about the equipment the ill person would be attached to. Nurses had also been available to answer questions.

At first, the most important questions for family and close friends had been whether the patient would survive and what quality of life they’d have. As time went on, people also wanted to know what was wrong with the patient, why they’d become so ill so quickly and how long recovery would take. Some people had wanted as much information as possible, others hadn’t (see ‘Receiving information and news from doctors‘).

During this extremely stressful time, relatives had mostly relied on information from doctors, which had often been explained in more detail later by nurses. Many people said ICU nurses had kept them informed, step-by-step, about the patient’s illness, treatments, what they were doing and why. Many also felt that, because nurses had spent more time with the patient than doctors, they’d got to know the patient better. Most praised the information and explanations given to them, some saying nurses had often answered their questions before they’d even had a chance to ask them (see ‘Nursing care‘).

One man described the support and information he and his partner received from an outreach nurse who visited them several times on the ward before his partner was actually transferred to ICU. Outreach services aim to improve the care of ICU patients on the wards and make the transition to or from ICU easier. Outreach nurses also aim to prevent patients from being sent back to ICU from the wards and to share their specialised nursing skills with other staff in the hospital.

Intensive care patients receive many medicines and some of these can cause nightmares and auditory or visual hallucinations. When the patient had regained consciousness (come round), some people had been worried about the ill person’s mental health because they’d been very confused or hallucinating. Many people explained how relieved they’d been to learn from staff that this state wouldn’t be permanent, and some had wished they’d been given more information about hallucinations earlier as this would have alleviated their anxiety.

Some people also wanted to know more about MRSA and why it was so common. This is a bacterial infection that mainly occurs in people who are already ill in hospital and can be difficult to treat. Some had been disappointed to learn the patient had got MRSA and wanted to know why. One woman had been extremely disappointed when she felt she’d been given conflicting information about whether her husband had actually had MRSA. Another said her sister had several infections in ICU and she wished she’d known how common infections in ICU were because this would have helped her to feel less worried.

After they’d regained consciousness, some ICU patients had needed surgery to help them with their recovery. Many relatives and close friends felt they’d been given plenty of information, sometimes by doctors and nurses and sometimes through written sources such as leaflets. Some had also looked for more information online.

During the early stages of the patient’s critical illness, most people visited ICU every day, often all day, and hadn’t had the time, interest or emotional strength to look for more information about the patient’s illness. A few people did look for more information on the internet, though, because it had helped them to feel they were doing something positive. It had also helped them understand the condition better or had given them hope if they’d read about the experiences of survivors. One woman said she hadn’t been given very much information about her mother’s heart surgery after ICU and her daughter and sister-in-law had printed information from the internet for her. One man said he looked on the internet to check that the treatments his partner was receiving were the best possible. He also consulted other specialists in the hope that everything that could be done for her was being done.

Some people received information from friends who’d researched online. One woman said she’d read books about the rare tropical disease her partner had and hadn’t needed to look on the internet herself. Her friends had been using it, though, and discussed what they’d read with her. Some people had been put off by information on the internet because they’d found it frightening or too negative.

Some said they’d had friends or relatives who worked in the health field and had been able to talk to them about the patient’s illness, both for information and support.

Planned admissions to ICU
Although most people admitted to ICU have an unexpected life-threatening condition, some are admitted after planned (or elective) surgery because they need special support and care after a major operation. Planned surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, every patient’s experience is unique and most people, patients and family, wanted as much information as possible before the surgery.

Many people told us how doctors had diagnosed the patient’s illness and had discussed it with them and the treatment they’d need. Most felt they and the patient had been given lots of information about the surgery and most had been given the opportunity to ask questions or call a telephone number if they’d needed more information. Some had also had the opportunity to visit ICU before surgery.