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...
The organ donation specialist nurse
When organ and tissue donation is being considered, a team of donation and transplant specialists are called in. The specialist nurse (or donor co-ordinator) is crucial in the organ donation process and was introduced to families when they were deciding whether to consent to organ donation. S/he answered as many of their questions about the process as possible and sometimes helped explain it to young children.
Most donor families we interviewed praised the information and support they’d been given by the specialist nurse while their relative was still in intensive care and after he or she had died. This included information on organ donation itself and where to find more support (see ‘Support and where to find help‘). They also appreciated that the specialist nurse had a difficult, challenging job dealing daily with distressed or grieving families.
An organ donation nurse explains the role of specialist nurses in the organ donation process.
Gender Female
Linda praised the specialist nurse who told her about organ donation, answered her questions and…
From saying yes, I will talk to somebody [about organ donation], I then met [donor co-ordinator’s name] who was our donor co-ordinator [specialist nurse]. And a lovely, lovely, lovely person. As were all the medical people, because at no time were we pushed, cajoled, persuaded. We just weren’t. We were left to ask the questions, to have our thinking time, although the thinking time wasn’t a huge amount of time. But we had things explained to us and I can remember sitting with [the donor coordinator] initially, and we had a conversation about organ donation and what it might mean.
And then at a later stage, just a short time later, we sat with [son’s name], my son who was 12 at the time, with the intensive care nurse and discussed organ donation. And I think because I had started to believe that was the right route to go, I didn’t notice that [my son] had become quite, not distressed, but he was very worried and very sort of concerned. And the nurse picked up on that, which I thought was tremendous because she didn’t know us particularly. But she sensed that [my son] wasn’t happy with the discussion that was taking place or was worried about something.
And at that point she suggested that [my son] and I needed to be left alone for [my son] to talk to me, because there was obviously something that was worrying him. Which is what they did. They left us and I discovered from [my son] that he had become concerned because he’d got it the wrong way round. He thought that they would take the organs and then John would die, it would cause his death. So I was easily able to switch that around and explain it to him and then he was very much with the idea of John becoming an organ donor.
So at 12 years old, he was very much involved in that. And I think that was right as well. Were made then really. That, yes, John would become an organ donor.
Many people we talked to said the specialist nurse had been wonderful and that they received updates on the organ recipients on a regular basis. Several felt comfortable to contact the specialist nurse themselves for updates on the recipients’ welfare or for information and support. Many families were very grateful for having been given locks of their relative’s hair and handprints.
Frank was given locks of his wifes hair and her handprints. The nurse wrote to tell him which…
They asked would I like a lock of her [wife] hair? I said, Oh yeah, brilliant They said, Well would you like us to take a hand print And again I said, Oh fantastic So this they did. They took a lock of her hair for myself, my daughter and my son. And we all got hand prints. And they said, Within a few weeks we’ll be in touch and let you know what’s happened
And sure enough they wrote to me within a few weeks to let me know that they hadn’t been able to use Jen’s liver for some reason. It wasn’t suitable for transplant. But that it had gone to a university and would be used to test anti-reaction drugs which I thought, Brilliant so that’s not a waste.
And the kidneys they’d gone to two blokes. [Recipient 1], he was aged 61 and [Recipient 2], he was aged 71. And the operations had been successful. In fact they were both at home doing very well. I was very lucky because, within a month after that, both [Recipient 1] and [Recipient 2] wrote to me which, that was really appreciated, the fact that with all their troubles that they’d taken the time to write. I really appreciated that. In fact [Recipient 1] has written a couple of times to me in fact.
And the transplant people keep in touch. Every, well it should be, I should be getting another one soon. But each year they drop me a line and let me know how they’re progressing and apparently they’re both doing well.
it’s not as if they take the organ and run as it were. You’re kept informed, you can have as much or as little information as you want. If you don’t want any contact with the recipients, fine. Your wish is respected. But if you would like to have contact, then they will, using them as a medium, you can.
Some of those we interviewed were still in touch with the specialist nurse many years after their loved one’s death. They appreciated the nurse emailing or phoning them back to answer their queries whenever they’d left a message. A few people said the specialist nurse now felt more like a friend. Ann (Interview 10) said the nurse at her local hospital organised training days on organ donation for doctors and nurses and she had been invited to speak on several occasions. Others said that, with the help of the specialist nurse, they had become involved in raising awareness of organ donation by talking about their experiences in the local media (see ‘Views on organ donation’ donor families‘).
Some of the people we talked to said they would have liked more information from the specialist nurse. They had not been aware that their loved one’s organs could go to recipient’s much older than their relative and had initially found this disturbing. A few people mentioned that they would have liked more information about inquests and where to find support for children coping with bereavement (see ‘Inquests‘ and ‘Coping with bereavement‘).
The recipients age wouldnt have mattered to their daughter Rachel. Sandra and Craig explain why…
Sandra’ They [specialist nurse] do give you amazing support, and she brought a letter of how the recipients were doing at that point. Obviously some of them were in hospital because it was major surgery that they’d gone through. But it was a brief update.
The one thing that took us back originally when she come out, which we didn’t realise at the time, but again it’s another thing you see, when you’re thinking back. Rachel was the size of an adult. Although she was 12, she was 5. We obviously thought with Rachel being a child, her organs would have gone to children. it’s just one of these misconceptions you have or beliefs. But her organs actually had gone to adults because she was practically an adult herself. And that kind of shocked us initially at the beginning, because we had talked about it to [our son] when we came home. You know, we were saying to him, Some wee child, somerdquo;
Craig’ Some small boy or small girl will be getting, will be in hospital now, getting a kidney, or might be a heart, a good pair of lungs We didn’t know at that stage. And there’ll be a child’s life saved
And when it didn’t happen, when we were told, No it’s went to well her kidneys went to a 36-year-old. It was somebody as old as that. And I think the liver went to someone who was in her fifties, we were kind of a bit taken aback.
Sandra’ Yeah.
Craig’ A bit taken aback by it. But looking atinitially, that was the initial shock, but when you look at, these people have got the right to live as well, and some, one of our neighbours said, they said, Well, I suppose a gran’s got a right. That’s somebody’s gran And I thought, well you’re right enough. It was just the natural shock of it all, that took us
Sandra’ Mm. And Rachel wouldn’t have cared who it went to. I mean that was just,
Craig’ That was the bottom line. She wouldn’t have cared as long as somebody had benefitted from it.
A few people felt they would have liked to receive a phone call from the specialist nurse a few weeks after the death of their loved one. Although they had been given a telephone number and been told to call if they needed to, they had felt uncomfortable doing so and believed that the nurse would be very busy with newly bereaved families and not have time for them. Some had become depressed and had found it impossible to ask for help.
Lesley had several questions she would have liked to talk to medical staff about but felt too…
I think as far as the organ donation is concerned, for us, there could have been along the way a lot more information. [Name], the co-ordinator [specialist nurse], she said that if at anytime we wanted to speak with her, we could. But somehow you get locked into this world of desolation and shock. You don’t function for, you’re almost like a zombie, you can’t function properly at all. And to actually make that effort to pick up the phone, I don’t know, I think because you feel these people, their time is so precious, you don’t feel you want to be bothering them.
And maybe it could have, there were lots of questions down the line that we felt we wanted to ask, or myself personally I wanted to ask, but couldn’t. You know things go through your mind afterwards about the actual operation and things that maybe we were told but I couldn’t remember, and I just needed confirmation. Little worries that go through your mind about the operation.
I have absolutely no doubt that it is carried out with the greatest respect for the donor, but still there are questions that I would have liked to have asked and just didn’t feel that there was really anybody there.
Several people praised the first specialist nurse they’d had but, when she’d left and was replaced by a second, they felt they did not receive the same level of support. Haydn felt that the first nurse was good at communicating, answering his questions and giving him lots of information. However, the second nurse did not keep him informed about the recipients.
Haydn would like more information about all the recipients, not just two of them. The first nurse…
The co-ordinator [specialist nurse] I had at the time, [donor coordinator’s name] was spot on. And actually she was great, but since then it’s been swapped over and the NHS has changed over and all, I’ve got no
I don’t mean to, it’s just not as good as [the first donor coordinator], shall we say. I could say a lot of words but I’m not going to. But you could. I do think that we’re not being treated very well by the co-ordinators. Which is a shame really because we’re actually, in the decision alright, the decision maker of giving organs wasn’t the hard one in my eyes. But we give the chance to someone else, for someone else’s life. All we’re asking in return is to ask how they’re doing. Half a dozen people are alive through Will’s donation and we’re only hearing about two.
That’s disgusting in my eyes. What happened to the other four? Like the lad who received Will’s lungs. What happened to him? The lad who received Will’s heart. What happened to them? The other person who received Will’s liver, what happened to them? The spleen. What happened to that? they’re not telling us and just like, Oh look the two recipients who had Will’s kidneys are doing fine Yeah and
So was that the first co-ordinator who told you that?
No, that’s the last one. And that was the first word we’ve had in about a year and a half. We agreed every six months. So that’s a bit naughty that, so they need to up their game.
Many of the donor families we interviewed said they would have liked to receive regular updates on the recipients’ welfare but, after the first year, they did not receive any more news. Some had phoned the nurse themselves to find out more but felt strongly that donor families who would like updates should receive them automatically on an annual basis. When Catherine’s son died in 1995, she and Tom were given no information about the recipients and only later managed to find out more. They hoped that things had changed since then (see ‘Contact with the recipients‘).
In 1995, Catherine was given very little information about the recipients. She feels that donor…
One of the things that caused me great pain was that I asked a very, very basic question, not to be intrusive at all. I understood that. Can you tell me who received John’s heart? Was it male or female? And what age range for each of the organs that John gave a gift. That was the only information I wanted. And I was told, You do not ask questions like that. You are not to have that information
And at the time, it is fifteen years ago, certainly if there was one transplant co-ordinator, Tom may be clearer on that, but the chap that I spoke to was not a co-ordinator, he was very much involved in not the hospital where John died, but another hospital. He was very much involved with collating that information. Not necessarily in the clinical setting of when transplants were taking place. And he was the person who said, You are not to ask those questions He was dreadful. It was so dreadful.
I had a lovely son and he did exist for 24 years. And through his gift of life I would just like to think that a co-ordinator [specialist nurse] through their database, whatever, however clinical that has to be, but that that is a possibility that they would have it. That, yes, there are families that would like just a phone call once a year either on the day the gift of life was made, it doesn’t have to be, I mean for John it was very close to his birthday. But, you know, that was the day the gift of life was made.
But something as simple as that, it doesn’t have to be a great big gesture. it’s just something that’s very simple that fifteen, twenty years down the line, that my John’s gift of life is still acknowledged. And in the way that you just make a phone call, you don’t have to send a card, just a very brief phone call or maybe they would like to do a card, whatever. But I think that we’re not here as donor families just for the first month and the first six months. We do exist and we carry that pain, and the joy that hopefully does come out of the pain, that other families have gained from that.
Eunice said the specialist nurse was wonderful but she would like having annual updates on the…
The donor co-ordinator [specialist nurse], I couldn’t fault her. She was wonderful. She took locks of Kirstie’s hair and she took hand prints, and she sent them to us so that we, different people had the things for me. She then wrote to us and told us what they had, to confirm what they’d removed. And she told us that a young lady had her lungs, who had cystic fibrosis. Two men had her kidneys, another one had her liver, and a six-day-old baby had one lot of her heart valves. I understand that heart valves can be kept for so long, so as yet I don’t know whether her other valves have been used.
We had a letter, virtually immediately from one of the men who had her kidneys thanking us and just saying how wonderful we were. Then I contacted the donor co-ordinator [specialist nurse] on the anniversary of Kirstie dying, a year on, and she got me information about the recipients, which were all doing well. And at the same time we received a letter from the young lady who had her lungs, which was wonderful. It really was good.
I have since had another update, which is one of the things I do have an issue with unfortunately. Our donor co-ordinator left to have a baby and, although her caseloads got passed on, I’ve never had any contact with the donor co-ordinators in the London hospital since.
I did a thing back in April with Donor Family Network, at the hospital where Kirstie was in [place name] and spoke to a donor co-ordinator from there, who did manage to get me further information about the recipients. So I do feel that we have been let down where that thing is concerned because, as a donor family, you give up something very precious and it I think that someone somewhere along the line could just keep you, being as I showed an interest in the first place, I just feel that on a yearly basis, on the anniversary of Kirstie dying or whatever, somebody could just send us an update regarding the recipients.
A specialist nurse explains the UK guidelines on what information nurses can give about…
Gender Female
We have quite clear guidelines as to what information that we give to families and, as I’ve said, we can offer them some follow up either by telephone or by letter.And the guidelines that we will give them some information, we will tell them the age of the patient approximately, we will tell them whether it’s a man or a woman, a child or an adult.We will also be able to tell them the length of time they’ve been on the waiting list and perhaps the length of time they’ve been on the dialysis treatment if its, for example, a kidney recipient. And we’ll be able to tell them what their condition report is, post transplant operation.
There are times when perhaps that recipient feels able to write and say thank you for the gift of life that they’ve been given, and they will then pass that letter onto their own specialist transplant nurse. They will then send that to our offices where the specialist nurses for organ donation work, and then we’ll forward it on.
We will forward on this information but just protecting the anonymity of both sides until a time they are both comfortable to share a little bit more information.
At times, those letters can go back and forth maybe as many as ten years really.
It is very rare for donor families and recipients to meet up.
If both donor families and the recipients would like to meet up, both will be supported by their own specialist and we do that through very much an agreed time and a safe environment for them.
So the nurses will probably be present when they decide to meet up?
I would feel that certainly one of the specialists would be there and, from my experiences, donor families do need a lot of support at that time, so I can’t imagine that we wouldn’t be there to support them through that.
Yeah. And you mentioned that, either by letter or by phone, you tell the donor families about the recipients age, whether it was male or female, that kind of information. Do you update them at any point later?
We will phone the donor family immediately post donation, if that’s what they would like and just tell them that yes their relative has been able to donate and which organs perhaps they have donated. We always follow that up with a written letter so that they actually remember the details and they’ve got something so that they can read over it. So we will write to them and the guidelines is within two weeks of the donation happening.
It may be that we then, every year, we will offer them the option of whether they would like updated information. We know from some families they don’t want that, so we ascertain that, but they always have our contact details. But I would say a lot of families either on the anniversary of the death or perhaps a birthday or another special day, that some of them will contact us and we will give them again that same basic information and an update.
So those are the guidelines, they don’t vary from hospital to hospital? Or can they vary?
The guidelines that the specialist nurses for organ donation follow are national guidelines, so that basic information is the same for all donor families. While some of the specialist nurses for transplantation, so the recipient co-ordinators, they will be employed by their own hospitals, so they will have their own hospital guidelines. But they are very much along the same lines of keeping information to a minimum and anonymous information.
Once we write to the families at the two week duration, we will then tell them that we wi
The funeral
Funeral ceremonies in the UK take many forms. They differ according to a preference for burial or cremation, and in line with any religious beliefs...