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possible (as discussed in 'End of life decisions'), they may discuss with the family whether some treatments should be withdrawn.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...
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...
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...
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...
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...
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...
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?
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...
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...
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.