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Organ donation

Interacting with doctors and nurses in intensive care

Organs suitable for donation usually come from people who have spent some time on a ventilator (life support machine) in a hospital intensive care unit (ICU). In ICU, patients are constantly looked after and monitored by a highly specialised team, which includes consultants, physiotherapists, dietitians and nurses, each of them with specialist knowledge and skills. Specially trained nurses provide round-the-clock care and monitoring, and there is a high ratio of nurses to patients – each person in ICU is usually assigned his or her own ‘named’ nurse (see 'Intensive Care').
 
Most people we interviewed spoke highly of the medical staff in ICU and the care their relative had received. They felt that doctors and nurses had done all they could to help their loved one and that information had been explained clearly. Nurses had often helped clarify or explain what doctors had told the family earlier, and told them more about ICU equipment or the nursing care itself. ICU nurses had sometimes encouraged donor families to become involved in the patient’s care, and this had felt meaningful at a time when relatives had often felt helpless.
 

The care Frank’s wife Jen received was fantastic in the local and city hospital. There was always...

The care Frank’s wife Jen received was fantastic in the local and city hospital. There was always...

Age at interview: 62
Sex: Male
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The [local hospital], where she [wife] was first, they were unbelievable. They bent over backwards. I was quite surprised in fact that the nursing team there, literally if the nurse who was scheduled to look after Jen, if she wanted to go and go to the loo, or have a cup of tea or whatever, she couldn’t go until there was another nurse available to take over. So at all times there was a nurse by her bedside.

And, again, the same when we reached the [city hospital]. It was a lot more high tech there than the equipment they had at the [local hospital]. And again the staff there were just absolutely brilliant. The doctors and the nursing staff, any questions we had they went to great pains to explain, because there’s all this massive machinery around and they went to great pains to explain, “Right, that’s her blood pressure, that’s this, that’s that.” So we could, if we went away from the bedside and came back, the first thing we’d do is look at the screen and we’d know exactly how she was getting on. Because they had taken the trouble and they didn’t make a mystery of anything.

But no, as I said, they made sure that, on every occasion, we knew what was going on. If they had to ask us to leave for any reason, when we came back in they’d say, “Right, we asked you to go because we had to do a, b, c,” whatever. And obviously it’s not nice for outsiders to be there watching while they’re doing their tasks. But you certainly couldn’t fault the care on either side. They were both absolutely fantastic.
 

 

Sue had a meeting with the consultant six weeks after her son’s death and two years later. She...

Sue had a meeting with the consultant six weeks after her son’s death and two years later. She...

Age at interview: 51
Sex: Female
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We had thousands of questions afterwards, but nothing actually at the time. But the hospital were absolutely brilliant and never failed to answer all our questions. We had a meeting fairly soon after we’d lost Martin, where it was explained to us that he’d had this congenital condition. And then we had a further meeting, probably two years later, because we had all the questions that were just niggling us, and they never failed to welcome us at any time.

My questions after we lost Martin were mainly in relation to the condition. He’d collapsed so suddenly but, as a mother, you beat yourself up. You find something to feel guilty about because he was so young and healthy. So I thought, “Should I have known? Should I have noticed something? Was there something I missed?” Things like that.

I then worried that he hadn’t been seen quick enough because we don’t live near a big hospital. I was assured afterwards that he would actually have been brain dead long, long before he ever reached hospital.

The consultant drew diagrams and gave me lots and lots of explanations that absolutely convinced me. But I obviously did have concerns at the time that we hadn’t done something right, or even they hadn’t done something right.

But I had no concerns over the care that Martin received. As a donor, he received equally good care as he would as a patient who they were trying to save, to live. Because those organs were just as important as if he was being treated to live. And as the co-ordinator [specialist nurse] once said to me, when she accompanied Martin to the operating theatre on the evening that the retrieval took place, he will be looked after just the same as if he was having any other operation because those organs are very, very precious to another person. So there’s no concern that, because Martin had actually died, that he wasn’t going to be treated in exactly the same way as anybody else.
 

It was important that the patient was treated with dignity and respect and many families praised this aspect of care when their relative was in intensive care and during and after organ donation surgery. Linda said all the doctors and nurses she spoke to when her husband, John, was in intensive care, made eye contact with her and updated her about his condition as honestly as they could.
 

Doctors and nurses answered all of Linda’s questions and always looked at her when they spoke...

Doctors and nurses answered all of Linda’s questions and always looked at her when they spoke...

Age at interview: 48
Sex: Female
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There was a young doctor who basically was delivering me the news that he thought that it was highly unlikely John would survive what had happened. And that’s some pretty stark information, a) to receive but for the doctor to give it.

And throughout the whole time that any medical people spoke to me, they kept eye contact with me. Which actually at the time I suppose I didn’t necessarily really think about that, but afterwards realised just how important that had been. Nobody evaded my gaze. Nobody evaded my questions. They answered me as honestly as they could, given the information at different stages, the information they had, to know what they could, you know, if they knew something they would tell me. I was kept informed and involved throughout the whole situation.

They [doctors] told us that it would be very dignified, that it wouldn’t be frightening. [My son] was also in the room, and obviously for him, well I hadn’t intended for him to be in there. I think all parents want to protect and I felt that it would be better if he wasn’t there, until one of the medical team said to me that, whilst I knew my son better than they did, had I considered that if [my son] went from the hospital and his dad was, although unconscious still alive, the next time he would see me I would be telling him his Dad had died. And I hadn’t really thought about it like that. I just wanted him away from the pain of it all.

But I will be eternally grateful to that lady because I think, from [my son’s] point of view, he saw everything, really, the whole way through and was with his Dad when he passed away. And it was what they promised. It was dignified. It wasn’t frightening, and John just slipped, literally slipped away. And we could then just say our final goodbyes and come away.

So I have a lot to be grateful for generally. And I didn’t necessarily see it like that at the time. And I think that we were able to adjust to what had happened the best way that we could. And certainly from [my son’s] point of view there was no mystery. He understood what happened and was with his Dad to the end. They were very close, John was the main carer while I was at work. So they did have a very close relationship.
 

Some people, though, were disappointed with certain aspects of their relative’s care. Eunice said that, when her daughter Kirstie was in the ICU, she and her family were asked to have meetings with the doctor. They were aware these would be difficult and suspected the doctor would be giving them bad news. However, they were left waiting for the doctor in a room on their own for quite some time and this had been extremely unsettling.
 

The city hospital was more impersonal than the local one but the care was ‘second to none’ in...

The city hospital was more impersonal than the local one but the care was ‘second to none’ in...

Age at interview: 55
Sex: Female
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The medical staff, as I say, I cannot fault. They were wonderful. They took us up to theatre. They spent time with us in theatre. And then they left us to have our time with her [daughter] on our own. And, as I say, the donor co-ordinator [specialist nurse] followed everything up with me afterwards. The care that, and the nursing that she got was second to none, I can’t fault it. It was just the [city] hospital was very impersonal.

And did you feel satisfied with the information you were getting from the health professionals and support during that time?

Oh definitely. Definitely. Words like catastrophic, I’ve never heard related to a medical term before. But we were told her injuries were catastrophic, and now I hear it all the time on the television.

And another, the Neurological Consultant told us that her injuries were irreversible. At the time they were very hard to grasp and understand but now we can see it’s, the only thing I can say about the [city] Hospital, they would tell us that the medical staff wanted a meeting with us, and we would go into this little room. And we would be left in this little room for half an hour on our own. And I think that was horrible.

Yes I understand that we go into a private room to be talked to and explained and told us what they were doing and everything. But to be left in there for that length of time, first I found was quite unnerving and we just knew when they called us, we were going into that little room to get more bad news. So I would say, if anybody was to ask me once we’re, that the family are taken into that little room, the medical staff go in at the same time. So that they’re not left to just, it’s not nice, it’s not nice. But that is one of the only things, one of the only negative things I can say really.
 

 
A few people felt that the news given to them by doctors could have been communicated more sensitively. Liz felt that the doctor who told her that her husband, Rick, was unlikely to survive, was ‘quick and quite abrupt’. The nurses, however, were caring and explained everything in more detail.
 

Liz only knew that her husband had had an injury playing football. She compared the abrupt way...

Liz only knew that her husband had had an injury playing football. She compared the abrupt way...

Age at interview: 46
Sex: Female
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Went over to the [name of] hospital, bearing in mind that we were like, ‘oh well, he’ll be fine’ because they said that they’ll take him if they can do something for him. And we still didn’t, nobody had mentioned anything about head injuries, or still didn’t really, we walked in blind because we didn’t know what was going on.

Walked into [name of] hospital, and it was a Sunday. There wasn’t many people around. Walked into [name of] hospital and there was this doctor rushing around, like quite quickly, walking quite quickly in white. So we just said, “Oh, my name’s Liz, Liz [surname], and my husband has been brought here. Can you tell me anything or can you point me in the right direction?”

And he just said, “Well, I don’t know what you want us to do. He’s got a massive bleed on his brain and I don’t think there’s much we can do about it.”

So I looked at my sister and obviously I burst into tears. But there was nobody else around. And my sister looked at me and we were like, “Oh no.” So we just stood there for a minute and then this nurse appeared from, I can’t remember where, but she just appeared and she just got hold of us and said, “Look, just come in this room and I’ll try and explain it to you.”

So she just sat us down and said that they’d took him into the operating theatre. He’d had a scan on arrival and they’d found a massive bleed in his head. They didn’t quite know what was going on, but they’d took him into the operating theatre to see if they could sort it out.

So they took us to this other room and just made us tea and everything and the nurse did apologise and she said that some doctors are busy, abrupt or whatever, not really got much, you know, patience. And she was really, really kind and caring. She gave us as much information as she had.

The doctors were kind of quick and quite abrupt. I know that you don’t want people to give you false information but when Rick died, it was, you knew that they had a job to do and you were trying to reason with it, that that was their job, they were giving you that information. But to me they could have done it in maybe a bit of a gentler way for want of a better word.
 

A few people felt strongly that doctors should ask all suitable families about the possibility of consenting to organ donation. Several also felt that doctors should tell donor families that their relative will still be breathing and warm to the touch when they say goodbye to them before organ donation surgery. They should explain that the ventilator is keeping the body supplied with oxygen so that the heart can carry on beating and circulating blood (see Saying goodbye before organ donation surgery).
 

Ann urged doctors to ask all suitable families about the possibility of donating organs after the...

Ann urged doctors to ask all suitable families about the possibility of donating organs after the...

Age at interview: 57
Sex: Female
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We felt that that was the wonderful thing to be able to say, that our son with his learning difficulties, he couldn’t talk, he couldn’t do lots of things, but he did something wonderful. He gave life to someone else.

We’ve never heard from the gentleman but we hope he’s fit and well. We donated all of Mike’s organs and his corneas. Unfortunately because of his condition they weren’t able to be transplanted directly but we agreed for them to go for research. So, in the long run, they may help lots more people.

Twice a year I go to my local A&E department and speak to the staff there and explain that, although they may feel that they’re being kind by not asking the question, because the families are so upset and it’s such a terrible time, in actual fact it’s cruel not to ask or give them the opportunity of having something positive come out of a terrible situation.

They seemed very surprised at that. But when it was told to them, it seemed obvious and now the levels of families that have been asked has gone up. So it’s virtually a hundred percent of families are given the opportunity to donate.

I don’t say that everybody should do this. But if they’re not asked, then everything stops there for the donor family. They’ve got nothing positive, there’s just nothing. It’s an end and there’s nothing. For all the people who are waiting, there’s nothing. So not only could one person die, lots of people could die because they’re waiting on the list. So, by not asking, they could actually cause lots of people to die. And seeing as their job is based around trying to help people to live and to be well, it seems a strange thing to give a death sentence to ten people by not asking the question.

I explained that they couldn’t possibly make you feel any worse because you couldn’t feel any worse. And, as for the time scale, you completely lose track of the time. You don’t know if it’s a day or an hour or a minute, or whatever. You lose track of all that. So there’s no reason not to not ask the question because someone is upset. Give everybody the opportunity. That’s what I would advise anybody to do.
 

 
Catherine and Tom felt that, although the ICU nurses looking after Catherine’s son, John, had been very professional, they were not very comforting. They also felt that nurses should tell relatives when they had completed a procedure so that the family could go back to their loved one’s bedside afterwards. Lesley felt that her son’s care had been good but was upset that nurses had not noticed that his bed was wet.
 

Lesley was upset to see that her son was lying in a wet bed. She was also distressed to be told...

Lesley was upset to see that her son was lying in a wet bed. She was also distressed to be told...

Age at interview: 58
Sex: Female
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I think there were a few things in the hospital. The facilities in the hospital for us as relatives at the time were very poor, which made things very difficult. After we had made our intentions clear, that we wanted Kristian’s organs to be donated, we went onto the ward and saw Kristian.

And I just sat by the side of his bed and just put my hand on the bed and on his hand, and his bed was soaking wet. And I think that his catheter had worked its way loose and he was just in a soaking wet bed. And at the time that was incredibly distressing that... and I just remember thinking at the time, oh they’ve got what they want and they don’t care about him anymore.

And that was quite difficult and, on the evening that we went to say our goodbyes to him, and the nurses pulled the curtains around the bed so that we could be private. And it was so, so distressing and we were just absolutely in floods of tears. And this person came in through the curtains and she said, “I’m sorry,” she said, “You’ll have to move out of there.” She said, “I’m doing an x-ray on the patient next door and you can’t remain in here.” And I just did, I had hold of my son and I just didn’t want to leave him. But we had to leave.

And I walked out into the main ward almost hysterical, crying and everybody was going about their business. The ward was busy, and I was just standing in the middle of this ward absolutely breaking my heart. And that again was another element to the whole thing that was incredibly distressing that, I mean obviously they had a job to do but one would think that it could have been dealt with more sensitively.

We did actually make a complaint and I think it was the ward manager or the hospital, now I can’t remember who this lady was, but she came and spoke with us and took on board all of what we were saying. And apologised for the sort of distress that she had caused.
 

 
More experiences of nursing care in ICU can be found in ‘Intensive care: experiences of family and close friends’

Last reviewed May 2016.
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