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Organ donation

Saying goodbye before organ donation surgery

Doctors must 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. It is around this time that the question of organ donation is raised and the family is given time to come to their decision within medical constraints (see Consenting to organ donation). 
 
Most organs need to be used very soon after death to ensure they remain suitable for transplantation and the person who has died is not deprived of the opportunity to donate. Once a family had consented to organ donation and accepted that their loved one had died, they said goodbye and then, in most cases, left the hospital. Saying goodbye, understandably, was distressing and traumatic. Added to this was the shock that comes with sudden illness or injury - for this person had been healthy and active only days earlier. Achieving a comfortable and dignified death had been crucial and many relatives had wanted to be present when the patient died. Some people had asked for the hospital chaplain or their own vicar to read the last rites.
 

Turning off the life support machine involved turning off various switches. It was terrible...

Turning off the life support machine involved turning off various switches. It was terrible...

Age at interview: 57
Sex: Female
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I said the only thing I wanted was to leave the ward before they took him away. They said that’s fine, but you’ll have only a matter of a few minutes in order to do that. So you have to decide before really, when you make the decision, and it’s the hardest thing in the world to do. I wouldn’t wish it on anybody. It’s very, very traumatic. It’s a horrible experience. But we felt that this was the only way that some good would come out of a terrible situation.

So then the life support was switched off. We had this preconception that there’s a little switch somewhere and you turn it off, and then they’re gone. Well it isn’t quite like that. There are lots of different switches and they all get turned off in due course. Then you wait and, again, that can be a matter of minutes or longer. That is terrible because you’re sitting there waiting for your child to die, which is too much for anybody really.

When the time came, we kissed him goodbye and left the hospital. And then did the hardest thing in the world, we had to go out and just leave him there. But we did it.
 

 

Haydn cradled his son in his arms as he died, a memory he will always treasure. He was moved to...

Haydn cradled his son in his arms as he died, a memory he will always treasure. He was moved to...

Age at interview: 52
Sex: Male
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One of the most poignant moments was when I cradled Will in my arms. It was about ten o’clock I decided that was what we was going to do. I cradled him in my arms. It was like the machines went dead for about 30, well maybe 30 seconds, it was on/off, that was it, and back on again.

And I was cradling him in my arms like a baby sort of thing. Because that’s something you don’t, you know, I cradled him into the world and I cradled him out of the world. That’s something that I will always have, but it will always be unique to myself and Will.

So I suppose the last one to see Will alive effectively was myself. I think, while I was cradling Will in my arms, a lot of people say that it doesn’t affect the old hospital staff. It really does because while I was cradling Will in my arms I just, I looked, I don’t know what made me look up to the end of the bed because I’d actually sat and laid like, I cradled Will like a baby sort of thing. And I looked at the end of the bed and there were three nurses literally crying their eyes out. That was really, that was horrible to see that, you know what I mean.
 

 

The transplant team gave Frank lots of information. He felt it was his duty, as Jen’s husband, to...

The transplant team gave Frank lots of information. He felt it was his duty, as Jen’s husband, to...

Age at interview: 62
Sex: Male
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He [doctor] told me that it definitely was Motor Neurone, of quite an aggressive type. And I said, “Well what’s the prognosis?” And he said, “Well I’m afraid there isn’t one.” He said, “It’s a matter of literally switching off the life support.” I said, “Well if anybody’s going to do that,” I said, “I’ll do it. It’s my duty.”

So arrangements were made for the following day. I then asked him if he could get in touch with the transplant team to come and see me. And a lovely young lady came along and I explained her the situation. And the transplant team were fantastic. They explained everything in the greatest detail of what would happen. They took us through all the paperwork because, unfortunately, there’s a little bit of paperwork involved but nothing too frightening. Nothing too intrusive. And it was all arranged.

They told us that, when we saw Jen the next day, she’d be dressed in a theatre gown. And that once everything had been switched off, instead of the long goodbye’s at the bedside, you had sort of five minutes because obviously it was important to get the organs while they’re fresh as it were.

So at ten o’clock we switched off, or rather I switched off, and within twenty minutes Jen had passed away very peacefully. And we had a chance to say our goodbyes. And they took her away.
 

The ventilator (life support machine) provides oxygen that keeps the heart beating and blood circulating after death. These donors are called heartbeating donors. Organs such as hearts, which deteriorate very quickly without an oxygen supply, are usually only donated by a heartbeating donor. Patients who die in hospital but are not on a ventilator can, in some circumstances, donate their kidneys, and in certain circumstances, other organs. They are called non-heartbeating donors. Both heartbeating and non-heartbeating donors can donate their corneas and other tissue.
 
After saying goodbye to her husband John, Linda asked if she could talk to the transplant surgeon.
 

The family said goodbye and Linda was the last one to see John. It felt unreal waiting for the...

The family said goodbye and Linda was the last one to see John. It felt unreal waiting for the...

Age at interview: 48
Sex: Female
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I wanted to see the surgeons that were going to carry out the operation and [the donor coordinator / specialist nurse] said to me, “Oh, perhaps I haven’t explained things for you. Is there anything you’re not sure about…” I said, “No.” It was very, very important for me to see the surgeons, because I needed to tell them...how special John was.

Yeah...Yeah I had to tell them and [the donor coordinator / specialist nurse] was, [the donor coordinator] was fine. I don’t know that anybody had actually ever actually asked to see a surgeon before. But for me I just needed, there were a couple of messages that I needed to get across.

And a little while before, because we were quite a few hours from when the decision had been made. And the decisions had been made that John would become a donor, there were several hours, you know if it was midday, in the day time, it was actually at 8 o’clock the surgeons arrived in the evening, so it was that sort of time in between.

And it felt like a bit of a dream for a lot of those hours. It wasn’t really real until I was told they’d arrived. And then the reality kicked in. We’d said our goodbyes to John privately, individually, which was a fantastic thing that the co-ordinators did, allowed his sister’s time, and me time, and [my son] time just to sort of say our goodbyes privately. And then when the surgeons, when the time was getting closer and closer, that he would come off the life support machine, as I say I just needed to see the surgeon.

And we met in the corridor outside of where John was taken to. And this man let me tell him for sort of probably only five minutes, but he allowed me to tell him how special my husband was; that I needed him to be treated with respect. And they needed to take care of him because it was going to be out of my hands. I couldn’t do anymore. But it was so important for me. I felt like I was sort of speaking on behalf of John to, you know, yeah well, do you know what, I’m giving these organs up but I’m still a human being. I’m still a husband and a father, and all of that.
 

Switching off the life support machine was traumatic for some people, and a memory that still haunted a few donor families years later. Saying goodbye to their relative felt shocking and unreal because they ‘looked as if they were just sleeping’. Their body felt warm to the touch, they were breathing and their skin was a normal colour. The ventilator keeps the body supplied with oxygen so that the heart can carry on beating and circulating blood. This preserves the organs so they can be transplanted.

When the ventilator is turned off, the heart stops beating, usually within a few minutes. The patient is then taken to theatre for surgery. Some people felt that donor families should be told beforehand that their loved one would still be warm and breathing when they said their goodbyes. Craig and Sandra said their daughter Rachel still looked healthy and pink when they said their goodbyes. Leaving her like that was distressing and Craig felt guilty.
 

Leaving Rachel was heart-wrenching. She looked as if she was sleeping. Her skin was pink, her...

Leaving Rachel was heart-wrenching. She looked as if she was sleeping. Her skin was pink, her...

Age at interview: 44
Sex: Male
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Sandra' It’s very traumatic because as Craig said you’re taken away, I mean I knew Rachel was going, I knew it was the ventilator, but Craig was still seeing his daughter still breathing, still warm I think. And we were signing these kind of things, these forms, and that is a difficult thing that parents or families might find difficult. That is something maybe they should be aware of, that.

Craig' Or that’s sort of, I certainly felt guilty for leaving her that night because looking back on her and she’s still breathing and we could stay if we wanted to, but I think we’d had...

Sandra' More [son’s name].

Craig'  Oh well my son was there, and, you know actually we were mentally and physically drained, there was nothing left in us. But I felt so guilty and it wasn’t till a couple of days later that the transplant co-ordinator [specialist nurse] was up, and she said, “I got the minister came round.” We’re not religious in anyway, but the school minister was up with us, and Rachel and the school minister knew each other.

Sandra'  Rachel worshipped him.

Craig' And he said, “Oh I’ll,” and she said, “Oh it was good the minister came back up.” And we said we didn’t know he’d came back up and he sat with her until they took her to theatre, and it was hours and hours. And I still can’t thank him enough for that. You know, he just sat with her holding her hand and just chatting away, that was the nice thing. The nice guy he was, but I still feel quite guilty for leaving her that day.

Although I was given the opportunity to stay but I just wanted to stay with everybody else.

Sandra' It’s difficult to say, I can understand as I say, I think I was torn as well but I’d got my nurses head on, and obviously my mother’s head on. And I knew she wasn’t there. It was the machine. But, as I say, it’s difficult to walk away and see. She just looked as though she was sleeping apart from the tube obviously from the ventilator keeping her going, she just looked as though she was sleeping.

Craig' I can understand why they’ve got to do it because it buys them a lot of time, rather than having to rush and get things going. It gives them a lot of time to set out to find proper recipients and to get the best possible match they can get and I can understand why, but I found that so hard.

Sandra' And I think families should be aware of that, that they do, that they’ll come and test them, brain stem death, and say that they’ve actually gone. When you’re looking at them, they look as though they’re still there. They’re warm to touch, there’s still a heart beat because everything...

Craig' They’re not dead.

Sandra' You know, everything, the machines are keeping everything going and it’s heart wrenching because you still think your relatives there.
 

 

Liz wishes she’d been told beforehand that, with organ donation, a patient continues to breathe...

Liz wishes she’d been told beforehand that, with organ donation, a patient continues to breathe...

Age at interview: 46
Sex: Female
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They did the brain tests on the Wednesday. And then obviously they came back that he was brain dead. And they also said with the machine, I remember them saying to the kids on the Tuesday, that the only reason your Dad’s chest is going up and down at the same time as the machine is because the machine is pumping it in for him. And so if the machine weren’t pumping up and down, Dad’s chest wouldn’t be pumping up and down. So you kind of grasp some knowledge from that, from listening to the nurses with the kids.

So all of his family and his friends, they all went and they were given a chance to say ta ra to him and say what they wanted to say and do or whatever. And then it came to my turn. Well obviously I was the last one in, and it was like I had this vision in my head that that you’d go in and they’d turn the machine off and his chest would stop going up and down and obviously he’d die. So that’s it, you know he died, you can hold his hand, you can say goodbye. And he’d die.

But obviously with organ co-ordination, organ donation, that doesn’t happen because they have to keep your blood flow going and they have to keep your chest pumping up and down. And they have to keep you warm and your organs alive to harvest them. But I didn’t realise that. And it was a bit of a shock to go into the room and the nurses said, “Well we can’t, you don’t turn the machine off because if you turn the machine off, then Rick’s body and his organs will die. And then we wouldn’t be able to harvest them.”

And I think that if any co-ordinators [specialist nurses] or doctors are listening to this, that’s something that they ought to, I don’t know whether it’s changed in the last ten years already, but I think that that’s something that they need to, with family, close family, and when you’re discussing these things, you need to tell them. Because that haunted me. It’s haunted me for the last ten years. I couldn’t believe that I had to do that. You turn around and you walk away but to me he was still warm and his chest was still going up and down, so therefore he was still alive.

So you’re asking questions like, “Well is this decision too early, even though you’ve had the information from the doctors and they’ve done the tests, and you know they’ve gone through their procedure, which is a legal and proper procedure. You still, as that man’s wife, I still thought that I was sending my husband into an operating theatre and they were going to take his organs out and he was alive. And that’s a hard thing to live with.
 

For some people, the image of their relative looking as if they were just sleeping was difficult to reconcile with the news they’d been given by doctors. The brain stem tests had proved that they were dead, yet they were still breathing. Tom, John’s stepfather, said he couldn’t accept the job of switching off the ventilator because, years later, he might still question if he’d done the right thing or switched it off too soon.
 

For Tom, an organ donation death is different from a normal death because a family can be...

For Tom, an organ donation death is different from a normal death because a family can be...

Age at interview: 63
Sex: Male
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Tom' There is a point I would make here, that since then I’ve been asked many times, “Well there’s no difference between losing any loved one, and whether organ donation’s involved or not.” And looking back you think that’s not true. I knew the minute it was mentioned that in this particular case we would have to have, or give the final decision. Not so much about organ donation, but whether to switch the life support system off. And that involves you in their death. That brings you culpable with their death. Because you never know is he dead? They do the brain stem tests. And you sit there and you see John laying in bed, occasionally moving, and you want so hard to believe he’s going to open his eyes any minute.

And I remember thinking, “If it comes to the time of switching off, would I have the courage and could I ask that I did the switching off?” I bottled out on that. But that was for me. For Catherine it would have been a thousand times worse, and you live with that the rest of your life. You are never sure.

And we remember and I remember how this has affected Catherine, a case in France where somebody had been in a coma for eight years, and then he woke up. How the hell do you deal with that? Yet all the facts were there, everything’s there. You know logically everything, but deep down you think did I do the right thing?
 

After saying goodbye to their relative, some people had wanted to reassure themselves and to see them in the chapel of rest after the surgery had taken place. Most did feel reassured, though a few were saddened when they went to see their loved one and s/he was alone in a room.
 

Seeing her son after surgery was traumatic but Lesley never regretted it. It was horrible seeing...

Seeing her son after surgery was traumatic but Lesley never regretted it. It was horrible seeing...

Age at interview: 58
Sex: Female
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It was on the Tuesday evening that the operation went ahead. And Kristian was taken down for his operation at about six o’clock and, at about five o’clock, we all went in and really said our goodbyes. And we expressed a wish to see him after the operation. Because I think we all needed in our minds to confirm that he had died. Because he looked so well in himself up until really the end. It was very hard to take on board that he had died because he’d still got a rosy glow to his skin. He was still very warm and all the rest of it. And so we requested that we see his body afterwards and that in itself was incredibly traumatic, although I don’t regret it for a moment.

It was unfortunate for us that we went back to the hospital at about midnight. And we had to wait for about another hour before we could see him. And we were told that he would be in the chapel of rest. We’d been told that earlier in the evening. But we were taken, run round to the back of the hospital, which in the dark it all looked very dingy and gloomy and horrible. And there was like a boiler room there. I seem to remember all this noise coming out of this one area. And we were taken into what was almost like a store room. And that shocked me greatly, I think all of us really. I mean they’d done the best that they could do; we were never given an explanation as to why he hadn’t been in the chapel of rest.

And they’d put a few candles around and he just looked very peaceful, but where he’d been put was very traumatic for us. And it was so important to see him at that point. I think I touched him and I don’t know why I should think that, but I was still expecting him to be slightly warm and he wasn’t. He was stone cold. Now that was a huge shock. And very distressing. But I don’t regret having done that.
 

Sue wanted to see the funeral director to help her accept that her son, Martin, was indeed no longer alive.
 

Sue asked the funeral director if she could see Martin after he’d died. When they left him in ICU...

Sue asked the funeral director if she could see Martin after he’d died. When they left him in ICU...

Age at interview: 51
Sex: Female
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I remember asking the funeral director whether I would be able to see him. I felt I wanted to see him because the problem is, when your loved one is a donor, you actually don’t see them die as such. You don’t have this, where you watch their last breath and then you sit with them afterwards.

When we said goodbye to Martin on the ICU he was actually still pink and warm and just looked like he was asleep. And so that’s actually very hard for a lot of people to accept that death has happened. And so I was one of those that needed to accept that was real. 

And so we wanted to go and see him at the funeral parlour. But I was also very concerned at what he was going to look like. But the funeral director assured me that I would see nothing. Because, as I said, before he’s looked after just in the way any other surgery is, so the wounds are dressed exactly the same way, as small as possible. And obviously we took his clothes to the funeral parlour so we weren’t able to see anything horrible.
 

Andrea’s brother, Paul, continued breathing for some time after the tube in his mouth had been removed. She worried that organ donation might not be possible even though that had been his wish.
 

Paul was aware of what was going on right up until the tube was removed. Seeing him at the...

Paul was aware of what was going on right up until the tube was removed. Seeing him at the...

Age at interview: 54
Sex: Female
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It was still difficult. At the point he died and we were still in the room because we were within a quarter of an hour of it being too late for them to do it. They had to take him more or less straight away, and that was really difficult. I wanted to say, “No, no.” I really felt when they were wheeling him out of the room, part of me wanted to say, “No, don’t.” But I knew, I knew it was right to do it. So I just let them take him.

Yeah, that was very difficult. I’ve got to admit it’s not easy at that point. Especially as Paul had been, he wasn’t being kept alive. He wasn’t brain dead and being kept alive by a breathing tube. If the tube stayed in he was alive and aware of what had been going on around him all day. He died because they took the tube out, so it was a different scenario to some other families where you know there’s nobody there anymore.

I did notice, it’s funny, maybe it doesn’t seem the right thing to have done, but when we went to see him in the undertakers, I looked at what had actually been done, and everything was all dressed as a wound would be as if you were living. You could see, and they’d even removed his catheter during the surgery as well, that he’d had a, you know for the last ten years. And they removed that and everything was all dressed properly. And he had been treated with dignity.

You felt reassured when you saw,

Yeah. We did.
 

Some donor families said the specialist nurse (donor co-ordinator) had asked them if they would like locks of their relative’s hair and handprints. They saw this as a sensitive and caring gesture and valued having them (see Interacting with doctors and nurses in intensive care). 

Last reviewed May 2016.
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