Intensive care: experiences of family & friends

Uncertainty

Because critical illness is often a sudden, unexpected emergency, it can change the lives of both the patient and those they are close to in a matter of minutes. The everyday lives of family and close friends may come to an abrupt halt or be turned upside down as they live in the uncertainty of not knowing whether the patient will survive. The ICU, an unfamiliar, alien environment, often becomes the centre of peoples' lives as they wait desperately for any signs of change or progress.

In the early stages of care it is often not possible for doctors to give a precise idea of the patient's prognosis but this usually becomes clearer as time goes by and the progress of the patient can be assessed. 
Here people talk about the uncertainty they'd experienced when a relative, partner or close friend had been critically ill in intensive care.

For most people finding out that the patient's illness or injuries were life-threatening had been extremely shocking because they hadn't known whether the patient would survive or be permanently disabled, brain damaged or paralysed if they did. Waiting for information, updates or signs of improvement had been distressing, one woman described the experience as 'worse than a nuclear explosion' (see 'Emotional impact on relatives and friends in ICU'). Completely out of the blue, peoples' lives had been thrown into chaos and, at least in the early stages, no one had been able to answer their questions. They'd looked for assurances from doctors but, at that stage, even the doctors hadn't been able to reassure them. 

Many people said they'd felt completely helpless during this difficult time and had lived from one day to the next, focusing only on the moment in hand. Normal daily concerns had paled into insignificance, and waiting for information about the patient's survival and quality of life after ICU had become all that mattered. 

Some people felt they'd been asked to give consent for vital surgery that might have helped the ill person survive. At the time of the interviews relatives couldn't give consent but could express that they didn't object (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. Some people said doctors had told them that, because the patient had been so ill and weak, even the life-saving surgery, their only hope, would be a huge risk during which the patient could die. Having to deal with the extreme stress of this situation had thrown many into turmoil. Waiting to find out whether the patient had survived surgery had been the most difficult part of some peoples' experience, a time that had often felt like days, whether the patient had emergency or planned surgery (see 'Planned admissions'). 

This man, whose wife had emergency surgery to remove a kidney, recalls her signing a form before the operation. 

This woman explained that, without surgery, her best friend would have died but, on three different occasions, her friend had actually been too weak to have the operation she'd so desperately needed.

One man, who'd worked in the health field, had asked doctors if his wife could take part in a clinical trial involving a new drug in the hope it might help her recover. Another said his critically ill wife had been given a new drug that had previously only been given to three other patients in that hospital. 

Some people said that, because the patient had brain or head injuries, it had been impossible for doctors to give them any definite information about the ill person's survival or mental health for quite some time. 

Two couples, 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'd been left in a persistent vegetative state (PVS). This is a condition in which the patient is severely brain damaged and usually considered to be unconscious and permanently unaware.Treatment decisions have to be based on medical evidence and taken in the best interest of the patient. 

Another couple felt they'd been told their son would be brain damaged and they shouldn't raise their hopes about progress (see 'Receiving information and news from doctors'). Both of these couples had been disappointed when doctors had dismissed their claims that their sons had shown signs of awareness, and both had felt that it had been too early to predict how they'd recover after a brain injury. In both of these cases, the critically ill person had recovered and is now living a healthy and full life. 

Thoughts about the future had worried people too. Many worried about losing a person they'd loved and living life without them. Others had been anxious about the possibility of caring for someone who'd been left brain damaged, paralysed or disabled. Other were concerned about how the patient would have coped living alone with disability.

Many people described how the patient's condition had improved and then deteriorated again, often more than once, and how anxious they'd felt visiting ICU, never knowing from one day to the next what they'd find. They described this time as 'a roller coaster' and said they'd experienced extremes of high and low, joy and despair, often within a few hours or days. 

Some had believed the patient had been improving only to learn hours later that, again, the ill person had deteriorated and could die. This had come as a shock because they'd assumed the worst had been over (see 'Receiving information and news from doctors'). 

Some said the patient had improved and deteriorated so often they hadn't known what to tell others. Those who'd emailed or written to the ill person's friends, thinking that the patient had very little time to live, felt uncomfortable about having done so because the patient had improved the following day. 

For some people, there was a lot of uncertainty not only about the patient's survival but about the condition as well. Some hadn't known what was wrong with the patient and waited days or weeks to find out. One man hadn't known that his father had a rare form of pneumonia until they'd attended an ICU follow-up clinic several weeks after his father's discharge from hospital. 

A few people described how they'd feared the worst when they'd visited ICU and had found the patient no longer there in their bed. One man said he'd been relieved to learn that his critically ill wife had been moved to a private room but disappointed to hear she'd got MRSA. This is a bacterial infection that mainly occurs in people who are already ill in hospital and can be difficult to treat. Many said that, during this uncertain, distressing time, they'd looked desperately for signs of improvement and hope (see 'At the bedside' signs of improvement and progress').

Last reviewed May 2015.

Last updated May 2015.

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