Intensive care: experiences of family & friends

Suspending normal routines: visiting ICU every day

People are admitted to an intensive care unit (ICU) because their illness or injuries may be life-threatening and they need intense support while they are being treated, constant monitoring and nursing care that cannot be performed on general wards. Patients stay in ICU for varying lengths of time, depending on the nature of the illness, and during much of this time they may be sedated or unconscious. Because critical illness is often a sudden, unexpected emergency, it can change the lives of both the patient and their loved ones 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.

Here men and women talk about their daily routines when their relative, partner or close friend was critically ill in intensive care. Everyone is different and experiences ranged from those who spent all day, every day, at the ICU to those who needed to balance hospital life with a sense of normality.

All day, every day, at the ICU
ICUs vary in terms of their visiting policies. In the UK many have 'open visiting', so visitors can spend as much time as they want with the patient. Some ICUs close for a couple of hours in the afternoon. Others have restricted visiting, where the ICU is closed to visitors at specific times during the day and at night. Usually, only two visitors are allowed at the bedside at any one time so that the presence of visitors doesn't get in the way of patient care. 

The most important thing for relatives and close friends had been being with the patient and many had spent all day, every day, at the patient's bedside, uncertain of the outcome in the early stages. 

Some people spent over ten hours a day at the hospital, returning home late at night. Others visited twice a day, staying late into the night or early hours of the morning. Most had wanted to spend as much time as they could with the patient, worried that this might be their last opportunity. 

As well as having to deal with the shock and distress of the situation, most people also had to make practical arrangements to enable them to be at the hospital all day. Getting time off work, child-care, and care of pets and homes had all been concerns that needed to be dealt with immediately. Because the illness had often affected the whole family, many people had had to think about the care of children, grandchildren or elderly parents. The allocation of responsibilities within the family sometimes had to be changed to enable visiting. One woman, who was a pharmacist, had to organise her mother-in-law's medication because she'd forgotten it in the panic of the crisis, and lived too far away to fetch it.

Normal daily routines and tasks, both at home and work, had often become unimportant as peoples' every day lives revolved around the hospital. Everything else had fallen by the wayside - housework had often been left undone, mail left unopened and food and sleep taken as and when needed. Some people had picked up snacks or meals at the hospital. Others had hardly eaten at all, and the meals they'd had at home had been snatched quickly before returning to the hospital. Some forced themselves to do errands but many had felt unable to attend to daily chores while the patient's illness had been life-threatening. One woman said her nephews and nieces had been unable to sit their university exams because their father had been so ill at the time. 

Some people spent all day at the bedside, leaving only when asked to by ICU nurses so the patient could be treated, turned, washed or seen by doctors. A few people who'd had very little support outside the family had had to juggle visiting with household chores and looking after pets, and sometimes had found themselves trying to do too much. One woman had taken her children with her to ICU during the school holidays. She'd also tried to continue after-school activities with them as well as working. 

When only two visitors had been allowed by the bedside at a time, some relatives or close friends had taken turns to be with the patient, ensuring that someone had always been there in case there'd been a change in the patient's condition or, later, in case the patient had regained consciousness and didn't know anyone or where they were. Some people from large families explained that different relatives had sat at the patient's bedside at different times during the day, depending on their work and child-care commitments. One of these people said her family had kept one another informed by sending text messages about the patient's progress or updating one another in the ICU waiting (or relatives') room. 

Many people described the journey to and from ICU, and the highs and lows they'd felt depending on the patient's condition (see 'Emotional impact on relatives and friends in ICU').

For some people visiting had been quite difficult because they'd lived far from the hospital or they'd been unable to take indefinite time off work. One woman said it had taken her two hours to get to the hospital. She'd had two afternoons a week off work for two months so she could visit her sister. Another, who'd lived in London, said she'd travelled to Wales every weekend when her mother was ill and, while she was in ICU, had stayed in Wales for a month. Some people explained how immediate family members from overseas had flown to the UK to be with the ill person, fearing it might be for the last time. Two women said family members had flown from the United States. Another said her partner's daughter had taken a last minute flight from her holiday in Cuba to be with her critically ill father. 

During this extremely difficult time, most people had only wanted close or immediate family around them and at the ICU. It is routine for ICU staff to ask for a list of visitors so they know who is allowed to visit. Some people recalled how, 'through the grapevine,' people outside the family had heard about the patient's illness or accident and had turned up at the hospital. Others, who hadn't been aware of the visitors' list, discussed this with nurses to ensure people outside the family wouldn't be allowed to visit, at least until the patient had started improving. 

Some of the people we spoke with had been the partners or close friends of the critically ill person rather than immediate family. One woman, whose best friend's father lived far from the hospital and was too elderly and weak to travel, had become her next-of-kin and had spent every day with her at the ICU. One man, whose partner's mother had become critically ill, had wanted to support his partner during this time but had been wary of being in the way because he wasn't immediate family. 

This woman said she and her husband had never been close to his sister but, when she was admitted to ICU, she became her next-of-kin because her husband had been overseas.

Once the patient had started improving, relatives and close friends had felt more able to go home during the day and, gradually, resume some of their normal activities.

Some sense of balance
Everyone experiences and deals with stress and trauma in different ways (see 'Emotional impact on relatives and friends in ICU'). Some people said they'd needed a sense of balance amid the emotional turmoil of visiting ICU. 

A few people who were spending every day in ICU became very exhausted and nurses had suggested they go back to work part-time to regain balance and focus. This woman, who'd spent a lot of time at her husband's bedside, had felt slightly stronger having spent a few hours each day away from ICU. 

Planned Admissions
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 an operation. Elective surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, everyone's experience is unique and how long they spend in hospital varies. One woman, whose husband went to ICU after a kidney transplant operation, said she visited him every day, either alone or with her daughters (see 'Planned admissions'). 

After visiting ICU
After spending all day at the hospital, many people had to make or answer phone calls to update other relatives or friends. Many had felt on edge or uneasy, wondering whether they would receive a phone call from the hospital asking them to return to ICU. As a result, some people were unable to get a decent sleep. One woman said she and her husband had been wary of having a drink to relax in case they were called back to the hospital during the night and had to drive. 

Some ICUs have limited provision for the overnight stay of relatives. Some people, who'd lived a long distance from the hospital, had been offered a bed in hospital accommodation for relatives. Some had used this facility. Others stayed in nearby hotels or bed and breakfasts (see 'The relatives' room' and 'Overnight accommodation'). This woman, who lived some distance from the hospital, had stayed at her daughter and son-in-law's house while they were in hospital and had found this extremely stressful.

Parking at the hospital and entering ICU
Some people talked about parking at hospitals. Some, who'd had reduced parking or parking permits because they would be visiting ICU regularly, were glad they'd been told about these by ICU nurses. Others, who'd struggled to find parking spaces, said that parking had been an added concern at a time they'd already had too much to deal with.

To be allowed into intensive care, visitors must press a buzzer and the door is opened by an ICU nurse. While patients are being treated, turned, washed or seen by a doctor, visitors are asked to wait in the ICU waiting (or relatives') room so that the privacy and dignity of the patient can be maintained. Although relatives and close friends had appreciated this, some had felt 'forgotten' while they'd waited for what felt like hours for a nurse to let them back in again. 

Last reviewed August 2018.


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