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Organ donation

At the hospital

Donor families talked about what happened when they arrived at the hospital or in intensive care after their loved one had suddenly become ill or injured. Some had been transferred from a small, local hospital to a larger one with specialist equipment.
 
Organs which are suitable for donation usually come from people who have been on a ventilator (life support machine) in a hospital intensive care unit (ICU). Patients are admitted to an ICU when they are so seriously ill that they need intense support while they are treated, constant monitoring and 24-hour nursing care that cannot be given on a general ward (see 'Intensive care: Patients’ experiences').
 
Most people we interviewed had no idea what to expect when they learned that their relative had been admitted to hospital.
 

Ann's son, Mike, was in intensive care when she got to the hospital. She thought he'd had a...

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Ann's son, Mike, was in intensive care when she got to the hospital. She thought he'd had a...

Age at interview: 57
Sex: Female
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Well the first thing we knew about this was we got a phone call saying that our son had had an accident and he’d been taken into hospital. We weren’t sure what was the problem because he did have learning difficulties, so we thought it was something to do with that.

We didn’t actually go to the hospital thinking we were going to lose him. When we got there, instead of him having a heart attack, which is what we thought would happen, he actually choked and he’d been without oxygen for 19 minutes. So he was in an induced coma in intensive care.
 

Because the illness or injuries had been sudden and unexpected, many people found it hard to believe how seriously ill their loved one was. Frank did not realise the gravity of his wife’s condition and was shocked when she herself told him that she felt she would die.
 

Frank tried to reassure his wife, Jen, that she would recover. He later received a phone call...

Frank tried to reassure his wife, Jen, that she would recover. He later received a phone call...

Age at interview: 62
Sex: Male
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They moved her [Frank’s wife] into CCU (Critical Care Unit) just to keep an eye on her at the [local hospital]. And the following day I’d been there with my daughter all day visiting. And about five o’clock I says, “It’s time to go home,” when the strangest thing happened. She [wife] turned around and, calm as you like, she said to me, “I’m going to die.”

And I was taken aback and straight away I thought, make a joke Frank, so I said, “Oh we’re all going to die sometime, but not now love. And she said, “No, I’m going to die.” I said, “Well no,” trying to reassure her. I said, “Come on, I’ll see you in the morning.” And my daughter and I, we came back home.

I phoned the hospital about 11 o’clock that night and they said, “Yes, she’s fine. She’s just settling down.” So I went to bed. About half an hour later the phone rang and it was the [local hospital] and all they said was, “Could you come in as soon as possible?”

So I phoned my son and got my daughter up and we all shot up there, and after a bit of trouble getting into the hospital, because of course it’s all locked up at that time of night. Finally got to get into CCU and Jen wasn’t in the side room anymore. She was in the middle of the ward with, I don’t know, a dozen people all leaping and flapping around her.
 

 
Several people described how helpless they had felt sitting by the patient’s side waiting for news, (see ‘Intensive care: experiences of family and friends). Some had been encouraged by nurses to talk to their loved one because there was a possibility that they could hear. When encouraged and guided by nurses, some had helped with the patient’s care. Several had seen ICU staff at work and said they had always treated their relative with dignity and respect. 
 

Nurses involved Sandra and Craig in their daughter, Rachel’s, care. They felt that doctors and...

Nurses involved Sandra and Craig in their daughter, Rachel’s, care. They felt that doctors and...

Age at interview: 44
Sex: Male
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Sandra' The one thing I’ll say I was so impressed by the hospital was, even though I think they all kind of knew from when Rachel arrived, even though they did the second scan, there really wasn’t much hope, they involved us in the care. The nurses, they let me do her mouth care, her eye care.

One nurse wanted to cut her finger nails. She had long finger nails. I says, [laughs] “If you cut them she’ll come back and you’ll be in big trouble.” Because that was her thing, she loved her long finger nails. But they were so fantastic with her. And there’s a lot of myths about organ donation if you think, people think that you’re going to donate organs or you’re registered as an organ donor, they won’t fight. They fought up to the end with Rachel and, as I say, I’ve seen it in nursing,

Craig' Anything they could have done, they would have done.

Sandra' have done. You know, if they thought there had even been a slim chance of even doing the surgery, they would have went and done it. But the bleed was so far down in the brain that just trying to do the surgery would have done more damage to it. They would have killed her anyway trying to do that.

But they never, never gave up hope for her and, as I say, they were in and turning her, and speaking to her, and they were just absolutely fantastic. I’ve got to say I was so impressed, and they were also touched by it as well afterwards.

Sometimes I’ve seen patients die and people can be so cold towards them afterwards. But they cried with us. And I got a bit upset and was sick and one of the nurses came with me and we were crying. And she gave us scrubs that the nurses wear and with two of us were having a, you know they were so, they were absolutely amazing. They felt it and you felt that, so they cared so genuinely.
 


Linda and her son waited in hope by her husband, John’s, bedside. It was hard to believe he had recently celebrated his 50th birthday but was now fighting for his life.
 

Although Linda was desperate for doctors to consider every possible option, including a second...

Although Linda was desperate for doctors to consider every possible option, including a second...

Age at interview: 48
Sex: Female
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Basically we were all day on the Sunday just really waiting and hoping and what have you. And then on the Monday morning I took [my son] in to go and obviously to go and see John, who was unconscious and who never regained consciousness.

And the nurse, the intensive care nurse said to me, “Oh the consultants wanted to see you when you come.” They wanted to be paged. So I imagined that that was not going to be a conversation that I wanted to have and it was probably going to be a conversation that really told me that there was no hope, and pretty much that’s what that conversation was.

And it struck me at the time, you know you see these things on television, and you watch people and wonder what might be going through their minds, and there I was. I didn’t know if I should ask for a second opinion, but if I asked for a second opinion, I was in the best hospital possibly in the country for this type of situation, with the best equipment, with the best neurosurgeons. Who was going to give me the second opinion?

But it was one of those things. I can remember sort of thinking, “What do I do now? I don’t know what I have to do. I just don’t know.” And I can remember asking the surgeon, or the, well he was a surgeon, if there was any possibility that they could have made a mistake, you know, could they have missed something. Was there something else that could be done and that they could check or do, and basically got the negative to that, that they had absolutely done everything they possibly could.
 

Sadly, not every patient survives critical illness, and death or the possibility of death, is common in ICU. Some people were particularly shocked and distressed to hear that their loved one would not survive because they felt they had been told insensitively or had not been sufficiently informed along the way (see Interacting with doctors and nurses in intensive care). Liz said she did not know her husband, Rick, might die; only after conversations with other relatives did she become aware of this.
 

Liz felt she was given very little information. She clung only to the positive news but, with...

Liz felt she was given very little information. She clung only to the positive news but, with...

Age at interview: 46
Sex: Female
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The nurses came in again when the doctors had finished. And they just said that we could sit with him [Rick] and they would be waiting for any signs. They’d be giving him medication. They’d be observing him and that he would have a nurse at his bed at all time.

So we went to see him when he was ready and he was just bandaged again with blood on it. Machines, he had stockings on, which he would have hated. But obviously because he was laid still and they would explain that, you know, to stop clots and…..

And I don’t really remember a lot after that. It was friends and relatives coming and going. They asked me how he was, but I didn’t have any information. I didn’t know. The nurses were like, “Well, we’ll give him this and if this machine goes up or,” but you didn’t really, because you had no knowledge of what was happening. And not really a great deal of information, it was like you were pretty lost.

And then of course your minds at, you’ve got four children at home. Your brother in law’s looking after them and your sister’s doing this and, you know, you’re constantly at the hospital.

But Rick, he never regained consciousness. He laid there from the Sunday to the Wednesday. On the Monday his older brother, [name], he came up and he made a comment to my sister in the waiting room, and said, “I’ve spoken to the doctors and the nurses. Does Liz know how grave this is?” And [my sister] said, “Well no, I don’t think she does. I think she’s just watching these machines and she’s just waiting for him to open his eyes. Because she hasn’t really got any more information. She doesn’t understand what’s going on.”

And nobody said, “He’s going to die.” Or, “there’s a possibility he was going to die.” Nobody had actually said that to me. So you just, all you do, or all I did was you hang on to the doctors and the nurses words, but only the positive ones. Because you don’t want to think of anything else.

So it was [my husband’s older brother] really who kind of figured it out that, you know, he wasn’t going to live. And I suppose in hindsight I think, because of our experiences, I think he was probably dead anyway. You know, when he had the massive fit [seizure]. I think he probably died there and then in his brain. And obviously they keep your body going and give you the medication because that’s what they do as medical professionals, when you look back at it. It’s like they were giving Rick every chance of life, which is what you’d expect them to do. And you hope, I suppose that there’s just something there that’ll kick in again.
 

One couple felt that intensive care medical staff had lacked compassion'
 

The ICU had no suitable room for relatives who needed some time alone. Though the staff’s care of...

The ICU had no suitable room for relatives who needed some time alone. Though the staff’s care of...

Age at interview: 63
Sex: Male
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Catherine' The first night of John being in intensive care I said to Tom, I asked if there was somewhere where I could just lie down, because I felt sick. I was sick in my stomach. I thought I was going to faint a couple of times.

And I was told where there was a little room, still on the main intensive care unit, but a little side room, which was a store room. And there was just all sorts of bit’s and pieces in it, not conducive at all to someone needing just a little quiet time and to some form of just space. And not all this sort of old pieces of equipment, or feeling as though they were going to fall on top on you. It was dreadful, it was really dreadful.

And the nurses didn’t have really much to say. They came and they did John’s blood pressure and pupils and all the vital signs that they were recording.

Tom' I remember looking round at the ward and to me standing there, there was no humanity on that ward. Everyone was doing their job professionally. No one came to see if we were okay. The room Catherine said, they let us go into, we were constantly disturbed by people coming in to get this, that or the other.

I think if I had to sum up that period I would say it was professional but there was no humanity shown, except for that young girl [a nurse]. And I would even include, because I’m not a Catholic, but I would include the Priest and he came in, did his duty and went off. And he was probably embarrassed about the whole thing.

A lot of the nurses seemed embarrassed. I remember thinking afterwards that the one thing they simply do not seem to be trained in is dealing with death. They did now know what to say.
 

Some people we talked to had been advised by nurses to go home and rest. At home, however, they had received a phone call asking them to come back to the hospital because their loved one’s condition had deteriorated further still.
 
When it had looked as though the patient would continue deteriorating, doctors explained to some people that any improvement in the patient would only be temporary and further deterioration, and ultimately death, would be inevitable. Hearing this news had been extremely traumatic and being involved in end of life decisions overwhelming. Haydn, whose son William had had depression and taken an overdose, said that doctors tried to wean him off sedation in order to discover if he had any chance of recovering. Sadly, he did not survive. Although Haydn knew that William could die, he said, ‘It still hits you like a steam train’.
 

Doctors told Haydn that William faced three options: he could be severely brain damaged, he could...

Doctors told Haydn that William faced three options: he could be severely brain damaged, he could...

Age at interview: 52
Sex: Male
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On the Thursday evening then I was at, invited into a meeting with the doctors to discuss Will’s present state of health. We decided between us that on the Friday morning he would come out of sedation. And that the following twenty four to forty eight hours were the critical time.

And there were three options' Will could either be severely brain damaged; he could come out unscathed, or he could die. Those were the three, you know, stark as that sort of thing. Because I’d asked them, “don’t bandy your words, just say it as it is.” And I’ve always been that type of person. So, in fairness, the doctors weren’t holding anything back. But they were more hopeful or they certainly appeared more hopeful.

On the Friday morning then we went to start to take Will off sedation, so that started at 8 o’clock Friday morning. So within twelve hours Will would finally come round. And so we were looking at sort of eleven and a half, twelve hours so…. Will would have probably started to come around about half seven, eight o’clock that evening.
 

At this point, some people desperately wanted their loved one to survive under any circumstances. With hindsight, though, they believed that this would not have been what he or she would have wanted. Some patients were given surgery but, sadly, did not regain consciousness.
 

Mick and Natalie's son was transferred to a second hospital, where doctors told them that he'd...

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Mick and Natalie's son was transferred to a second hospital, where doctors told them that he'd...

Age at interview: 53
Sex: Male
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Mick' They sort of whisked, he had like a fit [seizure], and then they whisked him off. And then they came back and told us he’d have to go to the [hospital name].

Did they say what they thought could be wrong?

Mick' Well we,

Natalie' No not at [the first hospital] they didn’t, did they?

Mick' No, no. They wasn’t sure at [the first hospital]. They said that he’d have to go to [the second hospital] for the, because what it was like, he’d got like a blood clot on the back of his head.

Natalie' It was a brain haemorrhage, wasn’t it? They told us. Obviously they took him to [the second hospital], scanned him and said they did have to operate. And they never, this sort of, he went through the operation but they said he’d never come around again. So….

Natalie' It was already too late. The damage had sort of been done and they said he’s not going to come round. So they just sort of kept him, this was like, they said we could stay overnight didn’t we?

Mick' Yeah.

Natalie' And they suggested that we call all the relatives and everything. And then they said, in the morning they said, “You know it’s not going to, he’s not going to get any better. He’s not going to come round.”
 

When doctors did not expect the patient to survive, donor families were advised to let other relatives and friends know because they might want to say goodbye to the patient. The news of their loved one in hospital often spread quickly and friends and relatives started turning up to see them. When Sue’s son, Martin, collapsed unexpectedly, her husband was in America and rushed back to be at his bedside. Haydn did not have contact with his ex-wife and had to find her address through the police so he could inform her of their son’s condition.
 

Sadly, doctors could not save Martin, who had had a brain haemorrhage. News spread quickly and...

Sadly, doctors could not save Martin, who had had a brain haemorrhage. News spread quickly and...

Age at interview: 51
Sex: Female
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Martin and I went to the local hospital where I was told he’d had a brain haemorrhage.It was only a small hospital and so we were transferred to a larger hospital about twenty five miles away, where he went straight to the operating theatre to try and have the bleed stopped.

My Mum and Dad came over and sat with me while we were waiting for news. And then my son and his girlfriend as well. We contacted my husband. The process was set in place for him to come home.

Martin went to theatre and came back to ICU. And then the bleed started again. So he went back to theatre again. And when he came back that time we were told that the bleed was just too extensive, and there was nothing that could be done.

Martin’s friends came to visit. Obviously bad news gets around very quickly. And by the next morning we were having teenage visitors coming in and out. Lots and lots of them actually that day, which was I think very brave of them to come and see him, to come and say goodbye. But he’d have been absolutely thrilled that they did all come like that.

So you were there and you had your Mum and Dad there as well, and later your husband came as well. It must have been very, very difficult without him there. And him being far, knowing what’s going on.

It was very difficult. It was difficult for me because obviously at times like that you just want your husband with you. It was difficult for my other son who was only 20 at the time, because he felt he had to fall into place as the man in all of this, and that he really was struggling. He’d lost his little brother.

And it was incredibly difficult for my husband because he didn’t know entirely what was happening, but he knew that Martin had collapsed and was in a coma. And by the time he actually travelled home from America, he’d realised that he was coming home to probably turn the machines off. Which of course was absolutely what was happening, but along the way we’d agreed to organ donation.
 

It was a huge shock to hear that a loved one’s condition or injuries were so serious that they would not survive. Some people were told as soon as they arrived at the hospital that the injuries their loved one had sustained were so extensive that doctors did not expect them to live.
 

When Jackie and her husband got to the hospital, they were told that their son, Lyall, would not...

When Jackie and her husband got to the hospital, they were told that their son, Lyall, would not...

Age at interview: 71
Sex: Female
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It was ten past eight on a Thursday evening and a knock at the door, two policemen. “Are you the parents of Lyall?” And your heart sort of stops. And they said he’d been involved in an accident and had head injuries, and he was at the local hospital.

And I thought, oh dear, he’s either not too bad, or really poorly because if it, otherwise he would have probably gone to the nearest neuro surgical unit at [place name].

So they offered to drive us up there, but I said no. So I drove my husband up and we went up there. We went to Accident and Emergency [A&E] and they said that he was up in ITU [Intensive Therapy Unit]. He’d had an MRI scan and that the brain damage was incompatible with life.

So they took us up to ITU. We met the doctor up there and he reiterated what they’d said down in A&E. And said that, in the morning, they would do the brain tests to confirm that he was brain dead.
 

 

Kirstie had a car accident on her way to work. She was airlifted by ambulance and taken to...

Kirstie had a car accident on her way to work. She was airlifted by ambulance and taken to...

Age at interview: 55
Sex: Female
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Kirstie had a car accident on the M20 on December 5th 2006. She was travelling to work with her partner in the car. It was just one of those freak accidents. Kirstie was in the wrong place at the wrong time. Nobody else was involved. Her car spun and a barrier went through the roof of her car.

Kirstie was the only one injured. [Kirstie’s partner] got out, no injuries at all. She was airlifted by [place name] Air Ambulance to a hospital in [place name], where she stayed for two days.

When we arrived at the hospital we were told from the beginning that Kirstie’s injuries were really major and nobody expected her to live. She had extensive brain damage. And at the [local] hospital they took her into surgery, mainly just to, because she had a quite an extensive gap in her head. They took her into theatre just to sew it up. And then took her into the intensive care where, this all happened on the Tuesday morning.
 

A few people also talked about how important it was for them to involve their young children in the death of their father (see ‘Interacting with doctors and nurses in intensive care’)
The doctors looking after a patient have to make every possible effort to save the patient’s life. That is their first duty. If, despite their efforts, the patient dies, death is diagnosed by brain stem tests. In the UK, there are very clear and strict standards and procedures for doing these tests. They are always performed by two experienced doctors who are completely independent of the transplant team. Death is confirmed in exactly the same way for people who donate organs as for those who do not.
 

Two consultants carried out a set of tests independently and confirmed that, sadly, Rachel had died.

Two consultants carried out a set of tests independently and confirmed that, sadly, Rachel had died.

Age at interview: 44
Sex: Male
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Craig' It wasn’t till later on in the day they said, “Look we’re going to start doing the brain stem tests.” And they did the first one and there’s got to be two consultants. They do have to have two consultants that do the tests. And I think there was, we were not present.  They said, “You don’t need to be.” And then I think they take the ventilator out and things like that, and see if the body is going to breathe for herself. And one of the consultants thought, “I think she’s still breathing.” The other one didn’t but one did, and because there’s that bit of doubt they continued to ventilate her and they’ve got to go through a certain, another set of tests, or the same set of tests in

Sandra' It was half an hour later.

Craig' Half an hour later.

Sandra' Yeah it has to be.

Craig'  So they told us that and then they did the second test and they came back and said, “No, she’s brain stem dead.”
 

It is around this time that the question of organ donation is raised and the family is given time to make their decision within medical constraints (see Consenting to organ donation').

Last reviewed May 2016.
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