To really not understand why people do not join the organ donation register?

[3littlefrogs]

I have been registered since I passed my driving test nearly 40 years ago. If I am dead I won't need my organs. They could save someone else's child, wife, husband, sister, brother.

As to the topic at hand, I am against an opt-out system. Spain, I believe, has the highest transplant rate in Europe (possibly the world, I can't remember) and although they do have an opt-out system they also allow the family to override it, as is the case in the UK with opt-in donors. However they credit their high donation rate to their sensitive transplant co-ordination teams, rather than the opt-out system itself.

I would broadly be in principle be in favour of a system which stops the family overriding the wishes of the potential donor, but then I also can't imagine the horror and pain of being at the bedside of someone - my daughter, my husband, my mother - on life support, very suddenly, possibly having seen them fit and well not hours before, and who I would move heaven and earth to keep them alive if I could. As irrational as it seems, I can understand how in that situation, giving your consent for donation could mean facing up to a reality you can't bear.

I think the term "harvesting" is repellent when applied to organs and probably putting people off - especially relatives.

I also think there is no way on earth the state can morally assume ownership of a dead person's organs without the owner's or the owner's representative's consent. BUT owner's wishes SHOULD take precedence over their surviving relatives, within the law. Else why do we both with wills?

Speaking personally, I am donating every last organ and don't understand why other people would feel differently - but that is up to them.

Right. I have googled.

It would appear that some people believe there is such thing as "cellular memory", there have even been studies into whether it exists. None of the studies appear to have been at all conclusive and seem to rely more on anecdotes, rather then actual scientific proof of how cellular memory works.

Links here:
www.thestar.com/news/world/2012/03/28/can_a_heart_transplant_change_your_personality.html

www.bibliotecapleyades.net/salud/esp_salud25.htm

www.ncbi.nlm.nih.gov/pubmed/1299456

But I think I would like to let this man who received a heart transplant have the final word:beforemyheartstops.blogspot.co.uk/2010/09/does-changing-heart-mean-changing.html

Not sure if this has been covered but there has been many debates about whether a person is dead and the harvesting of organs.

Quite often a person is brain stem dead, but their bodies are able to keep functioning due to respiratory machines used. But for all intents and purposes they are dead. There is no coming back and no medical treatments that can help. The organs aren't harvested, but the body is left functioning so that loved ones can say their goodbyes and they tend to operate as soon as the family give the go-ahead.

It's not nice. It's not an easy subject to debate either, because death by its very nature is scary and unsettling. However, so is being on the transplant list facing death.

I completely believe that everyone has a right to refuse anything to do with organ donation - they won't donate but they won't receive either. I do have an issue with those who won't discuss donating their organs but will happily accept an organ.

I am on the register - both organ & Anthony Nolan. I am a nurse who works in a paediatric intensive care unit & have cared for so many families who have been waiting for an organ. Some have been unbelievably lucky, whereas more have watched their beautiful children die waiting.

Please please think about this decision before you have to make it. It is emotive and it is difficult. I have only ever seen the transplant teams work with the utmost respect.

Emma you're right about Spain. They are the gold standard in terms of organ donation rates and it's their model of having Specialist Nurses in Organ Donation based in hospitals that we're now following in the UK. Hopefully this will lead to an increase in donation rates in this country through more education and promotion.
Smethwick I totally agree with you about the awful term 'harvesting'. It is now referred to as 'retrieval' or just donation.

Sorry I used the term "harvesting". I do not work in the field, and, being quite old, didn't realise it was no longer used.

Brilliant posts, Mini - you say exactly what I think (pages 6 and 7, I think). I am also concerned about how a privatised health care system will exploit people's altruism. Someone very early on said that a surgeon might earn herself £20,000 for selling an organ to a private patient (unless I misunderstood that).

And thank you to everyone for the factual information on here. I really appreciate it.

When my mother in law died, my son (aged 12) was so impressed by what his granny had done in donating her organs, that he told all his friends and immediately decided that was what he wanted to do too. He and his father were treated with enormous compassion by the hospital and they were asked detailed questions: which organs to donate and so on. My son was part of this.

All the kids in his class were given donor cards to fill in and as soon as he turned 16 he sent his off.

I hated the idea. Huge emotional reaction on my part (my brother died at 17 and my son's decision triggered something in me). However, I have now come round to it - very much reassured by some of the posters on here.

I don't want an opt-out system, though, for the reasons expressed by other posters. I'm afraid I don't trust the medics now that the NHS is being privatised.

As far as I am concerned, I am not on the register, but have told my kids I would like my organs donated. As I get older, this decision gets easier to take. However, I would not want to receive a transplant if I was over 70. I have grandchildren and passionately want to live to see them grow up, but not if I have to rely on medical science to keep me alive. I am hugely grateful for all the scientific advances that have been made, but think that on an over-crowded planet resources have to be rationed. If it's either the young (one-child policy, anyone?) or the old who have to go, then it should imo be the old.

Some opinions on this thread are sick.

Not your fault 3pigs!
Solo for your Mum. What an amazing gift she gave to so many people. The most important thing you can do is let your family know your wishes.

Xigris - thanks for the info you have posted. Yes, we were all very proud of my mil, especially my son, as I said. And I have told them.

Yes. What use are my organs to me when I'm dead?

Moved and appalled by this thread in equal measure.

How wonderful are those posters who have stood by the wishes of their loved ones and have allowed the donation of organs to help others in distress or dire need. Lemonylemon your posts brought tears to my eyes.

And how marvellous that so many on MN are signed up on the register - it is heart warming.

Not so wonderful are the ridiculous posts of MsBella and earlier one post by Stuntgirl who are both scaremongering which can put people off donating which could then have a knock on effect on those who are in dire need of organs. How could you? How dare you? On MN which is so widely read and used? Thankfully posters on this thread have their heads screwed on but how many lurkers are there who now have doubts because of the nonsense you have posted? Idiotic and irresponsible. I also find a lot of what mini has posted to be pretty awful as regards the elderly and also scaremongering about selling organs overseas.

I am on the Register - have been for 15 years. I used to donate blood. When I am dead I won't need my organs - I want to help people who need them

country kitten, I think you are being hugely unfair. Those posters have expressed their own reservations about joining the register. They haven't said other people should do differently. Everyone can make their own choice (which is why I agree with an opt in rather than opt out scheme). But people are entitled to ask questions; it is a difficult and complex subject. Those questions are legitimate and it is not the responsibility of those who have questions to put off asking them for fear it will put people off donating. The whole process should be clear and transparent.

Just to add I don't think MsBella has articulated her misgivings very well, and she clearly doesn't have the science she claims to have to support her argument, but I don't think it does to mock people who do have misgivings or questions they would like answered.

I think what upset me people was that no questions were asked, rather, other bullshit opinions were shoved down people's throats and no explanation or alternative information could be provided to back it up, just opinion.

It would appear MsBella has a penchant for being controversial (mentioned by another poster upthread).

I don't see anything wrong with countrykitten 's post.

I used to be terrified of donating. I used to think if I signed up and was in an accident a doctor would top me off to save someone else. There's an NHS webpage somewhere that for the life of me I can't find that explains how irrational that fear is. After reading that, I realised how illogical my fear was and got over it pretty quickly, became very passionate about organ donation and signed up. I was always aware that other people had different opinions and right to their own opinions, though.

Then my OH got sick. And now I get very upset when other people can't move from their illogical fears too - for the sake of others who are (rich or poor, black or white) very sick and in need of organs that would otherwise go to waste. Except they won't get those organs. Because someone, somewhere decided their fears or beliefs or opinions were more rational than the loss of someone else's life.

And what gets me most upset is my OH, the one who actually needs the liver, is so much more accommodating of other people's beliefs than I am. If I were him I'd be screaming, every day, in fear. But he has this amazing ability to accept someone like MsBella's opinion, or mini's and not to take them personally. But I can't. Because I know if they didn't think like that, maybe 5, 10, 15 members of their family might also be persuaded to consider organ donation. And 5, 10, 15 more people thanks to each of those family members. And so on.

And shit. I just had a fucking heart to heart with an AIBU post.

Slinks away from thread quietly

Fayrazzled where have I mocked anyone? I am afraid that uninformed posts such as those by msbella make me angry and sad as her 'views' can infect so many and they are nonsense.

Pickles I hope that a liver can be found for your OH soon. It is posts like yours that others should read to understand what being on the register can mean to others and how important it is that we sign up.

With regards to the whole concept of selling organs to private patients within the UK- 'tis a load of claptrap.
Organs which are donated have to be matched to a recipient to ensure best use of the organ (ie best match in terms of blood group/tissue type, height and weight) to ensure the best possible outcome for the donor organ. All of the donor and recipient teams are mindful of the fact that someone has died, and their loved ones have made a very difficult decision to donate organs. We want to be able to give a good outcome to everyone - to the patient who has received the organ - restoration of good health. To the family of the person who has donated, news of a good outcome, and some comfort in the knowledge that their loved one's death has transformed the lives of so many people.
My backround is within recipient heart lung transplantation, so I will use that as the example.
Within the UK there are 6 adult heart/lung transplant centres (Papworth, Harefield, Birmingham, Manchester and Glasgow). Each centre has their own on call team to collect donated organs. Each of these centres can put forward one urgent candidate (ie will die if they don't recieve a heart within a v short time frame)
If a heart is donated, it is first offered to the urgent list.
If the heart isn't suitable, it is offered to the centre that retrieved it for donation.
If no-one on that centre's list of potential recipients is a match it is then offered to the other UK centres.

The UK has a reciprocal agreement with Europe. Therefore in the unlikely event that an organ is unsuitable for anyone on the UK waiting list, it is offered to Eurotransplant (who coordinate for the whole of Europe - which also means that we receive organs from outside the UK).
If the organ is unsuitable for anyone on the Eurotransplant register, then it is offered to patients on the private waiting list. NO money changes hands. What the private patient pays for is the cost of the surgery and their post op treatment - not the organ.

Just wanted to say, after reading the whole thread, certain comments haven't in the slightest put me off. I was more iffy about it beforehand, but this thread inspired me so I have just signed up! So thank you all.

I'm not.

For the simple reason that I don't want to make decisions about me being dead. I'm sorry for feeling this way. I also wouldn't prepay for a funeral. I could never make an active decision like this. I wouldn't care if it was the default option.

I would most likely agree to family members body parts being donated after they are dead. Can't say for certain, but I think I would.

I also have fears about my body parts (or my loved ones body parts) extending the lives of people who could harm others. i can imgine the situation where my heart is in a person who murders or rapes a child. if they didnt have my heart they would be dead, so in a way i would have some if this blame. Irrational, selfish, ignorant? Maybe but it is a genuine fear of mine.

Btw I would never tell others these reason in real life as I know they would be ridiculed, so I am sharing them anonymously so you can be aware of why some people don't wish to register.

Fayrazzled - I think there's a difference to asking questions, or expressing your own fears without stating things as FACT and then refusing to back them up, apart from claiming to have known people who have studied science.

Same as per Mini's post re sale of organs - there was an excellent post further up which set out the protocol for allocation of organs, which was either ignored or disregarded.