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Intensive care: Patients' experiences

Death and bereavement

People are admitted into an intensive care unit when they are so seriously ill that they need intense treatment, constant monitoring and 24-hour nursing care. The length of time people stay in ICU depends on the extent of their illness or injuries - some may recover quickly and others will need to stay in ICU for weeks. A patient in ICU receives the best care and every treatment the medical team believes will help them to recover. On occasions when recovery is not possible, the medical team will discuss with the person's family whether certain treatments such as ventilation (life support machines) or kidney dialysis machines should be discontinued. If appropriate, the doctors may also talk to family members about organ donation

When people are admitted to intensive care as emergencies - for instance if they have been in a car accident - they may be unconscious and have no awareness of how seriously ill they are. For this group of people, it is only after talking to relatives and health professionals later on, that they learn how 'close to death' they'd been. After regaining consciousness and becoming alert, some people said they felt 'scared' in intensive care because they were aware of how ill they were and that people around them had just died. 

 

He felt scared and upset when he became aware of people dying in ICU and HDU.

He felt scared and upset when he became aware of people dying in ICU and HDU.

Age at interview: 46
Sex: Male
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So you say that while you were in intensive care you saw people who didn't survive in there, how did you feel about that? 

Frightened because I thought this is not, this is a place where people die. They're not, nobody's going home out of here, so I'm not going home. I'm thinking I'm not going home out of here. 

Just going back to the intensive care, before the interview you said people didn't survive in there and sometimes you saw their families coming in. How did you feel about that?

Well upsetting, you could hear them crying and, not nice and on HDU I saw more deaths on HDU than intensive care because I weren't compus mentis proper on Intensive care, you know what I mean. I saw more deaths on HDU and on the ward as well and they asked me then if I want counselling because I'd seen that many. I said no I'm alright but I'm just thinking, they're there for the grace of God, but that could've been me. They said I would die twice to the Mrs and nearly collapsed when they told her but this mustn't have been my time. 

Some people told us that they'd been aware of a sudden increase in activity whenever a patient died in ICU. Others said they only became aware of a death when they heard relatives crying, and that this could be upsetting and frightening. Many empathised with relatives who had to cope with the news of a loved one's death and with the medical staff whose job it was to break the news (see 'When someone dies in intensive care: experiences of family & friends'). Others praised the staff for their caring and accommodating approach when people did die in ICU. 

 

Knowing that people had died in intensive care made him realise how ill patients in ICU really...

Knowing that people had died in intensive care made him realise how ill patients in ICU really...

Age at interview: 37
Sex: Male
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And you remember people dying while you were in intensive care. What kind of an impact did that have?  

I mean even though you don't actually see them because the curtains are drawn, you know something's happening just because of the activity among people going in there than normally would happen. And then I remember the actual relatives obviously coming in, you can hear the crying. I mean I was asked did I want to move but because you think you don't really fully understand what's going on, your emotional state, you're not sure. But you do feel, even though you think well that could have been me there, you're heart pours out to the relatives that had to have done that because I then know it really hits you that, that could have been your family there because of, you know, because of what I've done or why I was in there.  

But again, I've mentioned this before on you know a conference where I've done a speech, whereas the nurses were very supportive and absolutely brilliant and sort of come and make sure you're alright. And I think it just hits it home more that, yes, this happens. 

It is, of course, traumatic for those whose relatives die in intensive care but everyone deals with loss and bereavement in different ways. ICU staff do as much as possible to help support families. Families are usually given as much privacy as possible. Staff make sure that relatives know what they are expected to do about making arrangements for funeral services, and that they are aware of the support available in the days ahead. One woman we talked to explained that her 14-month-old daughter died in intensive care because of a rare form of meningitis. She discussed donating some of her daughter's organs to help two other children to survive.

 

She was stunned at the news of her daughter's death because tests done earlier that day had been...

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She was stunned at the news of her daughter's death because tests done earlier that day had been...

Age at interview: 37
Sex: Female
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But when I got to the hospital, she [daughter] wasn't in her bed, she wasn't in her spot. They'd taken her down for another brain scan. And they got back, and they never told me any results of it until my husband got there. And I just stayed with her.  And they were very good because they didn't let, not that they should have let on that something was wrong, but they never let on that anything was wrong. And it was the doctor that, when [my husband] got there he told us, the doctor took us into a room and she told us. And I remember listening to her but I didn't understand what she said for a good thirty seconds. And then I just said, "My baby's dead." And we just couldn't believe it. And they left us alone for a while and then we went back to see her. And I just couldn't believe, you know, it's just, because the brain scan at lunchtime had been fine, the EEG in the afternoon had been fine, and then five hours later she was brain-dead on a machine. 

But I remember as well at 4 o'clock in the morning, going back to 4 o'clock in the morning, I remember then saying, "Can anybody have her organs? Is it, you know, is there any chance that some good can come out of this?" And they said they'd got to find out. And fortunately it was the type of meningitis that you could donate organs from, it wasn't your normal one. And they called in the transplant co-ordinator, and they managed to take her liver and her heart. So now we've got two little girls alive from this. And then we said goodbye to her at about midday. And I told all the family that we were going to donate the organs, which, I mean it didn't matter whether they agreed with it or not because that was going to happen. That was my decision. [My husband] didn't disagree, he just said, "Well, they're no good to her now." So we were actually only in the hospital for about 24 hours. And that was it. 

Coping with bereavement
Bereavement is a difficult time and some people told us that it had helped them to talk to people outside the family. Some saw counsellors and psychologists inside and outside the hospital to help them talk about their feelings. Several people mentioned how difficult they found coping with the anniversary of a death. One woman, whose unborn baby died in intensive care, said she found the anniversary of her child's death so difficult that she couldn't work on that day. Spending time with her family helped her cope with her loss a little better. 

 

She was critically ill in intensive care and finds the anniversary of her illness extremely...

She was critically ill in intensive care and finds the anniversary of her illness extremely...

Age at interview: 41
Sex: Female
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Every year when it's approaching October I start to dread it. My birthday's at the end of September, so every time it's getting towards me birthday I'm always really conscious that it's a few weeks when I have to unlock all these memories of the 23rd of October. And I don't think it's as much as thinking when the day arrives, I don't think I think that's the day I nearly died. I always think that's the day my baby died. And that's why I don't want to unlock it all. 

But it's, you have to do, you have to unlock it and you have to, you know, that day I can't do anything. I can't, I can't work, if I've got to work I have to take it off as a holiday or a day off. I can't you know, go anywhere and do anything nice. That's the day that I just have to spend either on my own or with my husband or with my little boy and we do something together. And then the next day we just get on with our lives. 

Some people recommended contacting these organisations or talking to others who'd been through something similar. There are many organisations that are there to help people cope with loss and bereavement (see our dying and bereavement resources).

Last reviewed August 2018.
Last updated November 2012.
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