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Intensive care: Experiences of family & friends

When someone dies

Sadly, not every patient survives critical illness. In cases where clinical staff feel recovery isn't possible (as discussed in 'End of life decisions'), they may discuss with the family whether some treatments should be withdrawn. Sometimes the patient may die quite quickly after coming in to hospital, because of injuries or illness. Here people talk about their experiences when a relative, partner or close friend died in intensive care. 

Some people said they'd found it extremely distressing just knowing that patients in ICU had died while they'd been visiting their own relative or close friend. Hearing other visitors crying or meeting them in the relatives' room had been very difficult and a stark, upsetting or frightening reminder of just how vulnerable their own relative was. For those whose relatives had died in ICU, this was an extremely traumatic time. One woman described how her husband had died of liver disease. Another explained how her son, who suffered from severe depression, took an overdose and died ten days later in ICU. One woman's sister-in-law had an accident and died three weeks after being admitted to ICU. One man, who happened to be an ICU consultant, said his 83-year-old father had spent five weeks in intensive care and died after having complications during surgery for cancer of the kidney. 

 

Her husband, who'd had liver disease, improved slightly at first but was then re-admitted to ICU...

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Her husband, who'd had liver disease, improved slightly at first but was then re-admitted to ICU...

Age at interview: 40
Sex: Female
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My husband had been ill for about - some time. But being a typical bloke he didn't go to the doctors and just got ill and tired and lethargic. And then he did have jaundice. So that is when I put my foot down and I said, 'Right that is it, you have got to go to the doctor. You have got to see the doctor.' And so we did do. And she sent him for a liver scan. And we actually got the results of those back on that day. And he had got what is called a decompensated liver disease which is a disease generally associated with very, very, very heavy drinkers. Now he didn't drink in excess. It was just unfortunate that he had a liver that was intolerant to alcohol and he only found this out after the disease had gone that far that it would be very, very difficult to retrieve his health really. 

So he was taken into hospital. And he was put on a liver ward. And he was making progress. He was on a specialist liver ward and it was improving slowly. His bloods were improving. And then he developed a cough and so we didn't really think anything of it. The doctors really didn't think anything of it at first but then it got worse and worse. They sent him for a chest x-ray which came back clear 

So he did this x-ray which was clear or so they thought. And then he started to swell up. And his kidney bloods came back deteriorated. And they gave him some antibiotics but unfortunately his chest infection developed into pneumonia. So he was rushed up to Intensive Care. He was put onto dialysis and given all sorts of different antibiotics to try to clear the infection on his chest and it did do. And after about five days in Intensive Care he was off the ventilator. He got a tracheostomy in. He was off the ventilator onto something called the CPAP, which is a sort of a step down, and he was transferred onto High Dependency where he was given some drinks and able to start drinking again. 

Unfortunately he aspirated on his drinks, which went up to his lungs which then caused some sort of infection, similar to MRSA, it is actually part of the MRSA group. So he developed that. His kidneys started to play up and his liver was deteriorating again badly. All these things are connected with each other you see. So then after he had been on High Dependency for a week, he was transferred back onto Intensive Care. And from there on really he just deteriorated. They tried everything that they could do but he was still deteriorating after he had been back on for two days. He died.  

 

His 83 year old father developed a succession of complications following surgery for cancer and...

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His 83 year old father developed a succession of complications following surgery for cancer and...

Age at interview: 48
Sex: Male
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My father was 83 years old at the time. He had been losing weight and was becoming anaemic. He was being seen at the hospital by a gastroenterologist who eventually picked up a large mass in his abdomen. They initiallly thought it was an aneurysm but scans revealed it to be a large kidney tumour. He was booked for an elective operation to remove the kidney which went well and he was electively booked to come to Intensive Care postoperatively. 

He did well over the first night but then he developed a pneumothorax, which is unusual for the type of operation he had. They put a chest drain in to re-inflate the lung but that set him back and he needed to go back onto the ventilator. He was doing well but the following night some bowel poked its way through a surgical drain site in his abdomen. This again is a very unusual complication which was discovered around midnight. So they had to take him back to theatre in the middle of the night for yet another operation. 

Thus he had two weird complications, a collapsed lung from an abdominal operation and then the bowel poking through a drain site. And again that set him back. After that he got a chest infection, deteriorated, then started improving again. Over the next potentially five weeks, just as he was getting better from one complication then a new problem would beset him and he would spiral downwards again. For the last two or three weeks, he was in Intensive Care for five weeks in total, he was getting a lot of abdominal pain and distension. And eventually his abdomen became very distended and he was getting very weak indeed. His condition carried on deteriorating and he was in a lot of pain. You could see he was just losing strength and tiring. My mother had been doing a daily vigil from morning to night, and she realised he was fading away. My father then had a dignified withdrawal of life-prolonging care, where he was just kept comfortable, with my mother, myself and my brother alone in the room with him. He just passed away peacefully after fighting for five weeks. 

People recalled how they'd been told that the patient was dying, or was about to die, by doctors and nurses. Most said information and news had been given sensitively and compassionately, though one woman felt confused by the medical terms doctors used and was very distressed when she realised her son would be dying later that evening rather than in a few weeks' time, as she'd believed. Her son died shortly after being transferred from ICU to a ward. In some cases, relatives were aware that death was imminent and inevitable because they'd learned to observe improvements and deteriorations in the function of different organs by watching the monitors the patient was attached to. 

 

She felt doctors used a lot of medical language and didn't explain clearly that their son would...

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She felt doctors used a lot of medical language and didn't explain clearly that their son would...

Age at interview: 59
Sex: Female
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They took us down to this room and started to talk. And we couldn't quite understand what they were saying. And it was a lot of technical terms and not sort of much else. And then we'd got this decision to make. So my husband said to them, 'Well, what are you trying to tell us? Are you now trying to tell us that there is nothing more you can do for him?' And they said, 'Yes, that's what we're trying to tell you. And that you've got four decisions to make. One to put him, keep him where he is, take him back to the local hospital, let him go into a hospice, or try and manage him at home'. They said, 'You need to get people up that are very close, that need to be in on the decision. And then once everybody's here, we'll come back and explain to him what is happening'. 

By then there was a nurse in the room with us the whole time and then later on another one appeared. And we can remember her coming in. But the other nurse must have got her there somehow, because obviously they knew that it was getting near the time that [our son] was going to die. And to be honest you could see all the figures going down on the monitors anyway. And so you knew that, you know, it wasn't good. But I just couldn't believe that there wasn't a doctor to come and speak to us. The nurses took us, left us there, and then they came back a bit later and said, 'Look, we really think you ought to have a cup of tea. You've had, you know, you've had a shock'. And they said, 'It will give us a chance to sort him out and make him more presentable for you'. 

When you had the conversation with the doctors who were telling you about your four options, they were using a lot of technical terms and -

Which we just didn't understand. I mean we knew what some of the terms meant obviously, because you do tend to pick up a lot more than you know as it were. But they would, instead of saying, 'Look, we're sorry, we've got some bad news to tell you' there was none of that at all. They went into all this technical terms, and saying what they could and couldn't do. And I would have preferred them to have come straight out, and not for us to have had to turn round and say, 'What are you trying to tell us? Are you trying to tell us that there is nothing more you can do for our son?' And which is when they said, 'Yes'. 

Was it at that point that they also said he'd have two to three weeks? 

We were told he'd got two to three weeks. 

And then it was only later through the nurse that you'?

We found out that he was going that night. 

Was he on a ventilator? 

No. He was on oxygen. And that's one of the reasons they talked about, the two doctors that had come to see him from Intensive Care said that his breathing wasn't very good and they'd got a special machine. They explained that it was a different machine to what he'd been on at the local hospital, but they would see how he went. But they said if it turned out that it was painful for him, then obviously they would stop it. But they said, 'We can assure you we will keep a good eye on him'. So there was me expecting him to be going off to Intensive Care, and then a quarter of an hour later I'm told that he's only got two to three weeks. It was just an unbelievable day in the way the whole pattern emerged, and the fact that nobody actually came back and told us that, 'He's in fact going tonight' from a doctor's point of view I mean, you know. I didn't think it had been fair for the nurse to have had to have come and told us. 
 

 

A nurse rang her at three in the morning and told her, once she and her husband were at the...

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A nurse rang her at three in the morning and told her, once she and her husband were at the...

Age at interview: 59
Sex: Female
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It was over three hundred tablets of everything. He went even into tablets that had been lying in the drawer for over a year, stuff of my husband's and myself that he took all that. He was then taken to Accident & Emergency where, that was horrendous because that was, nearly five hours of the doctors and nurses not really telling us anything. 

I thought maybe his stomach would be pumped out but it wasn't. They had to know exactly what he'd taken, and one of the drugs was so dangerous and the amount he'd taken does affect the brain so very badly and, I, we were left in a room and it was only me kept going out and out and calling any doctor, nurse, you know, 'How's he getting on?' 'We're dealing with it, he's alright, he's sedated'. And then we were brought back in the room, but that was like five days not five hours, horrendous. The only thing at that minute that got me through it a bit was my father was in the opposite wing of the hospital, just had his stones removed from an operation and he was fine and getting through it. And it was just going to be with him in the others part of the hospital which whiled those hours away. 

And then I came back again and, it was, still we weren't told, by ten o'clock that night and this happened at half past one that afternoon. So you can imagine the time was horrendous. We were told he was going to Intensive Care and I thought, I had a relief almost as though he was going to be really taken care of because I knew the doctors and nurses would be watching over him all the time. 

That first night I think was really a blur. We stayed and we didn't go home, we stayed the night. And the next morning we were obviously just by his bedside. Through the time he lasted ten days but it was very, very rocky, very up, very down, one doctor telling us that he was going to survive. We had a big black cloud but the other side of the black cloud was the silver lining, and I gave, I really had hopes that this was wonderful. I thought, after about four or five days my husband and I got to know every monitor in Intensive Care. I knew how it operated. I knew what it supposed to be, I knew that what was registering was wrong, that my son was not doing as well as we thought. 

His heart stopped a couple of times and they revived him, and he carried on another couple of days. The day before he died we were told that he would pull through, but they were, we weren't to know whether he was going to be either any brain damage or certainly liver damage and we were warned, which was another massive step to take. The staff were wonderful I can't wish for a better place. The support was incredible. We chose to stay at the hospital rather than come home. Every time I came home I couldn't cope with being at home. I had to be near him. And other complications set in, pneumonia set in. And on the tenth day he gave up the fight and died. 

When they called us through the night on that tenth day they just very, very, the phone rang at three a.m. and you know, it's just your gut instinct. And I just knew that something wasn't right that they, I can't remember the words they said but it was, 'Would you just come to the hospital?' I think I thought to myself 'he's already gone' just because they were very calm when the nurse phoned us, and I'd really expected the worst when I got there. Yes it wasn't very nice but our son was still alive, just hanging on, but two of the drugs that were taken were acting really so terribly dangerous and there was absolutely nothing they could do. They'd done everything else, they had I think charcoal was put into his body at some stage that absorbed one of the drugs and it was successful. Another drug had come, completely disper

Everyone is different and some people had wanted to be with the patient when he or she was about to die while others hadn't and had seen the patient afterwards, when the life support equipment had all been taken away. 

 

She and her husband saw her sister-in-law after talking with doctors, who withdrew treatment and...

She and her husband saw her sister-in-law after talking with doctors, who withdrew treatment and...

Age at interview: 70
Sex: Female
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Finally, after about three weeks, my husband came back. And things were not really getting any better. Just about the time when he was coming back there was some suggestion that they might be in a position to slightly lighten her sedation. Which of course I looked forward to the possibility that I'd be able to speak to her. But it wasn't, but there was obviously the worry that it would be so painful for her and her hips would be so painful that actually it wasn't fair to consider bringing her round. But they did talk about giving her a tracheotomy so that she didn't any more have to have this thing going through her mouth. But it actually never happened, and her condition deteriorated.

But he [doctor] said I think, 'Do you want to be with her or not?' And we decided not to be. And then about twenty minutes later they came out and said she had actually died. And then we went in and saw her then. 

Most people praised the support they'd received, especially from nurses, and the privacy they'd been given at this immensely traumatic, upsetting time. ICU staff do as much as possible to help families through this time, making sure that relatives are given as much privacy and information as possible. This includes giving them information about registering the death and contacting the funeral director, all of which need to be done by a relative or close friend in the first five days after someone has died. Relatives are also told about the support that is available in the days ahead. 

 

She sat with her husband until he died and, in time, was given information about what she had to...

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She sat with her husband until he died and, in time, was given information about what she had to...

Age at interview: 40
Sex: Female
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At that point did you have all the privacy that you needed? 

Yes. Yes. They had actually got two special rooms and both of them had got locks on the doors. So if you want a really, really private time you can just lock it and they have got a kitchen there which is excellent. But they haven't got any beds.

And once they told you that your husband had passed away, you were in your own private room with your parents and mother in law? 

Yes. 

What happened afterwards. After'?

Afterwards. The nurse asked me about tissue donation and about organ donation. She gave me a booklet which was fantastic actually. It was the best thing that anybody could ever have done for me because I was so spaced out and it was a sort of step by step guide really of things that I had got to do. Basic things, you know, like register the death, phone up' that was absolutely fabulous. I have got that actually. It was really good. And that was it really. She gave me a big squeeze, a big cuddle and we left. 

What was the next thing to do after that. If someone was in a similar situation wondering what happens next, what happens next. You came back home. You had this leaflet that told you step by step? 

That is right. 

What was the next thing that you did? 

Well he died on the Sunday, so obviously the Registry office isn't open on Sunday. So on the Monday, the doctor gives you a, it is a certificate of the reasons that he has died. It isn't a death certificate. And you phone up the Registry Office and explain the situation and you go down with this thing that the doctor has given you and you are issued with a Death Certificate.

Some people explained how they'd collected the patient's belongings, often with the help of nurses, because they didn't want to go back to ICU the following day. One woman, however, described her feelings when she returned the following day to collect her son's things. 

 

The day after her son died, she saw another patient in the same bed he'd been lying in, fighting...

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The day after her son died, she saw another patient in the same bed he'd been lying in, fighting...

Age at interview: 59
Sex: Female
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I went back to Intensive Care the following day after losing our son to collect his belongings. I actually took a few deep breaths and I actually opened the door of ITU that I'd been in for the last ten days backwards and forwards seeing my son in that bed. And when I got back that day, the following day, there was somebody else in there, somebody else fighting for their life. And I just suddenly looked at life in a different way, this is the other thing in the Intensive Care is that you are cocooned. That world and the world outside, it is a different world. You are totally and utterly in that room with all these people who are fighting for their lives and you don't see anything outside. And that's okay, that's okay at that time but when I went back the following day and my son's not there and there's somebody else in the bed, that is life for you. 
 

Some people said there'd been a coroner's inquest after the patient's death. This is an inquiry into the causes of death and its aims are to determine how, when and where the person died. One woman, whose son had had bipolar depression for many years, said he'd taken an overdose and she and her husband had been allowed to see him after the inquest. Both of them had found this extremely helpful while they'd been grieving the loss of their 21-year-old son. 

 

It was important for her and her husband to see their son not attached to any equipment, looking...

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It was important for her and her husband to see their son not attached to any equipment, looking...

Age at interview: 59
Sex: Female
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The one thing I did, I had to, we had an inquest. I had to go and identify, and I never thought I could do that. And I did, and I'm glad I did because he didn't have any of the tubes in him and he looked absolutely lovely, absolutely lovely, beautiful skin, face, everything. He was just asleep, just had his eyes closed. A neighbour came with me, my husband couldn't come and, from that day, I wanted to go to see him every day. I then said to my husband, 'You must go, you have got to go'. And he, 'I, oh I can't, I can't'. And then he just went without saying anything to me, he just did it on his own and then I couldn't keep him away. He was there every day, right up until the funeral, he just stayed with him the whole time. 

Visiting our son every day was something that I think everybody should do it's, I think it's really important, really important, because once the funeral's here it's just far too late and you can't look back and say, 'I wish I'd done it, I wish'. It's not frightening, it's not nasty. It's just very peaceful and very lovely. 
 

Many people also talked about organising a funeral for the relative who had died (see 'Funerals'). 

Last reviewed August 2018.

Last updated May 2015.

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