Views on organ donation: donor families

All the donor families we interviewed had consented to organ donation on the death of a relative. Many said that organ donation was one of the few positives to come out of a traumatic situation (see ‘Consenting to organ donation‘). Eunice said, ‘Sometimes it’s what gets me up in the mornings if I’m having a bad day’. Hearing from the recipient or talking to other recipients had been very rewarding and had confirmed what a crucial difference organ donation can make to someone else’s life. Some noted that many people would be willing to accept an organ if they or a relative became seriously ill, and that people should be just as willing to donate. The more people that signed on the Organ Donor Register, the more patients could be helped.

Eunice feels that people who are willing to accept an organ should be willing to donate too. She…

Age at interview 55

Gender Female

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We’ve got to look at it from the flip side. If, God forbid, they was in a position that either they or a very close loved one needed an organ, they would be wishing that somebody out there had donated that organ.

So, in return, I think we have to be prepared to donate an organ ourselves. Because, again as I’ve said, we can’t take them. they’re no good to us when we go. Why not let somebody else get the use out of them. And because, as a family for us it was a major, major tragedy. But out of our tragedy comes somebody else’s happiness. And the ability for their family to start afresh and go on and lead a long and happy life. And to me that is one of the ultimate things in it all.

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Many of those we interviewed encouraged others, including friends and colleagues, to think about organ donation and consider registering. Some donor families, who had not thought about organ donation until they were faced with the decision in intensive care, said they’d now signed up. They encouraged others to talk about organ donation with their family and let them know their wishes. Several stressed that, although it was important to carry a donor card, registering online was the most effective way of stating one’s wishes.

Donating an organ is doing something positive after your own death. Sue encourages people to talk…

Age at interview 51

Gender Female

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To anybody who hasn’t yet registered on the organ donor register, I would just say to them to just think about it. I can appreciate that it’s not for everybody but people aren’t always aware that they’re far more likely to need to receive an organ than they ever are to be in the position to donate, because there are only certain types of death that can lead to a donation.

Whilst it’s not an easy thought because people don’t like thinking about death, it is important to consider whether you want to do something positive after your own death, or after the death of a member of your family.

I would say the worst thing that can happen is a bit like it did for us, we were sat in ICU with a child who had just died, or was dying. And suddenly put on the spot. Because he wasn’t on the register. We were but he wasn’t and therefore we were put on the spot that night, and asked whether we would consider it. And yes we knew the answer straightaway, but everybody doesn’t because they haven’t considered it beforehand.

And when you’re in that position of a tragedy, it’s not the best time to think about difficult decisions. And it’s very easy then to say, Oh no, I can’t go there. I can’t think about that. it’s too painful. Too much to think about And possibly regret it afterwards. Whereas if you have the opportunity to talk about it with your family around the tea table, and just actually openly discuss it, and then you know each other’s wishes. And if you’re ever put in that position, then you know the answer and you don’t have to be put on the spot like we were

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Mick registered for organ donation almost immediately after their son’s death. Natalie needed…

Age at interview 53

Gender Male

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Mick’ Well I made up my mind to register more or less straightaway after our son passed away. And once I decided, once we decided that’s how it is, we knew that with our son, I decided there and then that when my time comes I’ll do exactly the same. And I’ve registered, and it took you a bit of time to
Natalie’ Yeah. I didn’t do it straight away, but now I am on the register.

Mick’ You know, we’re both on the register. Yeah.

And what took you the time? You wanted to think about it or it just wasn’t the right time?

Natalie’ It just wasn’t the right time. Obviously, I was still upset and I knew it was what I wanted to do, but I just couldn’t,

Mick’ do it at the time.

Natalie’ go that last step straight away. You know, it took me time to do it.

Of course. So when you read those leaflets and you made that decision it had quite an impact on you too then, to go and register?

Mick’ Yeah.

Natalie’ Yeah

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Donor families that we talked to said it was important that people understood that the benefits of organ donation were two-sided’ recipients and donor families benefitted. Knowing that someone else could have a better quality of life because of their relative’s donation was very fulfilling and, for some, a comfort. Several said that their loved one had been treated with dignity and respect and, even in their death, had been able to do some good. A few felt that, in some way, their relative now lived on in someone else. Some donor families felt that others should also know that their relative’s organs could go to a recipient older than the donor, and that not all organ transplants are successful.

Lesleys sons donation helped five people have a better quality of life. She has never regretted…

Age at interview 58

Gender Female

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I think for Kristian the biggest gift are his organs and the fact that he has helped five people extend their lives, however long that might be. And I would do it all again. I wouldn’t hesitate. I think it’s so, it’s so very, very important.

There are so many people on the waiting list for transplant and when you hear some of their stories it’s just heart wrenching. You know, people that have lived all of their lives in and out of hospital, suffering horrendous health problems. And you know in our family we, touch wood, have all been blessed with good health. And for a lot of people who have, never have health issues they don’t really ever think about people that have got these health issues. And it’s not until it touches your life that you realise how many people are affected.

And, oh we’ve always been great believers in organ donation, and I think if people can, if people can talk about it and get as much information as they can and get their names onto a register, which is so important. And if you have to make that decision, if you’re forearmed, forearmed? You know if you’ve got all the information there, it makes the decision really so much easier. And we felt in control of that.

I think you know, if we hadn’t have talked about it and we were approached about organ donation, it would have been far more difficult for us. And, I mean people can go and get hold of a lot more information, it helps tremendously.

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Some donor families were keen on raising awareness of organ donation and had been interviewed about their experiences on TV, radio or in newspapers. Several felt it was important that organ donation was discussed in schools so that people would be more aware of it from a young age. Catherine and Tom (Interview 13) felt that giving people information was important so that they could make an informed choice about organ donation.

Organ donation was one of the few positives Craig and Sandra had after their daughters death…

Age at interview 44

Gender Male

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Craig’ it’s one of the very few positive things that I can kind of cling onto if you like, from the whole terrible negative thing that’s happened. it’s one of these things that I kind of, well I do believe in organ donation but, it’s a very small positive thing that happened that day out of something that was immensely negative and tragic.

Sandra’ And it’s the one thing that’s kept us going since then. We’ve got quite heavily involved in promoting organ donation. We do an education. We were involved in making an education pack for all secondary schools. We’re
Craig’ I think that all started with me doing that thing I wrote for the paper. They did a thing last year, and the Scottish Daily Record when it’s the donation week, or Transplant Week sorry. And they had stories about transplant recipients, and there’s all about life, kidney recipients, and there’s a story about somebody who’d got a new kidney and who was doing really well.

And they did this brilliant article about Rachel. And I think everybody then started to look up from NHSBT and the transplant co-ordinators [specialist nurses] and I think they started to realise, wait a minute this is a good story that we can use. And that’s how we ended up doing the education pack for the Scottish schools, because we got invited to tell the story.

To the schools as well? To, to
Craig’ Well I haven’t been invited out to the schools, but just with the education pack.

Sandra’ it’s a DVD that’s going, it goes into every secondary school, there’s Rachel’s story, there’s another couple,

Craig’ Oh there’s lots of different stories on,

Sandra’ stories on it, but there’s some,

Craig’ And the teaching packs to go with them, you know so that was a really big thing.

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Some of the people we spoke to praised the organ donation system in Spain, a very successful system, because many people there consented to organ donation on the death of a relative. Some donors also discussed the presumed consent organ donation scheme, where organs are taken unless the donor has specifically opted out in writing. In the current ‘opt-in’ system of organ donation in England, Scotland and Northern Ireland, individuals are asked to register their willingness to be a donor after their death.

Some of the donor families we talked to were in favour of presumed consent as they felt it would mean more organs would be available and more lives could be saved. Most, though, preferred the current ‘opt-in’ system as they felt that organs should be donated freely by those who want to and that it should a conscious decision. Several felt that education and more training for doctors and nurses would help raise awareness of organ donation and be a better way of increasing donation rates.

Tom said that organ donation is called the gift of life because organs are donated freely by…

Age at interview 63

Gender Male

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If you receive an organ donor heart or something like that, you knew somebody had died, there was no question about it. For you to live with that, it was important that you knew that whoever donated it did it freely without any sort of pressure brought on them. And that it was the ultimate altruistic gift, without knowing who it was going for, without knowing, well with knowing you would never get any thanks.

You have decided to donate, so whoever receives that knew that it was with your blessing. Hence the gift of life. Gift was very important in that. And that’s for the recipient that they can actually live their life knowing that they have not caused the death of anybody else. They have not benefitted from the death of anybody else, but they have benefitted from the gift given early on, when they were fully aware of what they were doing and why they were doing it. Hence the gift of life.

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Effects on family and friends

We interviewed recipients who'd had different kinds of transplants. Experiences vary from person to person and also depend on the kind of transplant involved. Most...