AIBU To think that if you are not on a doner register you should give up any rights to a donated organ?

[littlemoominmamma]

Do you think this would be a reasonable idea? If you have an organ donation card you should be entitled to an organ.... if not then that is your choice?

so can tell me HOW they use the register?

Like I said I'm on it - but I'm really not sure - apart from to gauge "numbers" what it's used for.

Alwayslooking - my understanding is that the register was introduced simply to raise awareness of organ donation, to encourage people to make their wishes known and encourage the issue to be discussed with relatives in order to increase the number of potential donors. The thinking being that people were less likely to refuse consent to donation if their loved one had registered their wishes.

No.

I am an organ donor. I would be glad to give up an organ to save any life.

The deal in our house is;

If I die, or DH, or one of our children die in an accident then fine the NHS can have whatever it wants.

If I or one of my family are lying in intensive care, then I would very much rather the consultants there focused on getting me better rather than hovering around wondering what could be salvaged! I would very much rather they believed that I would never under any circumstances donate anything TBH! Then they could never be persuaded by the offer of many thousands of pounds to send one of my organs off to the Middle East/Russia etc.

What I am asking is do I qualify to receive an organ under your policy moomin?

Or do only people who have signed your organ donation register get an organ?

I will donate everything possible and also that of my loved ones including my children - God forbid I should ever be in that position. The reason is that I look after 170 dialysis patients. Each one of those patients has kidney fialure which if untreated will kill them in 2 dyas to 2 weeks on average if they do not receive dialysis. Dialysis occurs for 4-6 hours per session 3 times a week, every week for the rest of their lives unless a kidney transplant becomes available. During a session they have two large bore needles inserted into their blood vessles and they sit/lie their for hours whilst their blood is cleaned sufficiently for them to survive until their next session. They can be taking upwards of 20 tablets a day.
Kidney failure generally has a worse outcome than many cancers most cases of HIV .
These people are restricted in what they eat ; how much they drink ;where they can go on holiday. They will nopt be enojoying a typical Chirstmas meal.They can't just pop to relatives for Christmas without considering how they will get their dialysis. There are no weeks off ; no breaks unless they get an organ.

A soft opt-out system is essential in my opinion. We should benefit from apathy not suffer as a result of it.

Serinbrightside - your fear about not being 'saved' if you are viewed as a potential organ donor is a valid one and has I think been addressed previously in the thread.

But the criteria for being able to donate organs relates to a very specific clinical situation - when the patient has been diagnosed as brain stem dead. Brain stem death may be the result of traumatic injury (car crash etc) or a stroke or other ischaemic event, when a strict set of diagnostic tests are carried out which conclude that the patient is brain dead. A patient in intensive care HAS to be brain stem dead in order for organ donation to be an option AFAIK.

So say for example, you needed a heart bypass, ended up with some complications and ended up on a ventilator because your lungs weren't functionng properly, the n organ donation wouldn't even be on the radar of the people looking after you.

serin - that's utter rubbish that they would hover around wondering whether to save you or not .

They have a duty to save life - and that's what they do - if they can't - then yes - they may ask your family if they wanted you to be a donor (if they remember) - of course is they don't think to ask, then you'd have to rely on your distraught family thinking to bring it up.

Info on brain death :

www.nhs.uk/conditions/Brain-death/Pages/Introduction.aspx

Alwayslookingforanswers, What wonderful faith you have in our NHS.

If push comes to shove I would rather have my family decide my fate.

Sassybeast, Thankyou for your links, are they provided for the benefit of other posters or do you assume that my family has limited medical knowledge?

I can understand the sentiment, but because we have an opt-in system, it just wouldn't work. My friend needed an emergency liver transplant 2 years ago, i have no idea whether he had ever got round to putting himself on the register even though I know he would have been happy to donate.

Sadly he died, despite being no 1 priority in the UK for a new liver leaving my best friend a widow at the age of 36. The thought of him not being a potential recipient because he had never got round to registering is too awful to contemplate.

However, if we had an opt out system and someone actively said they didn't want to donate, then I might feel differently.

I believe we should have an opt out system by the way. If we did, my friend might still be alive.

Serin, I know absolutely nothing about your family and I'm perplexed by your comment. You have expressed a concern about organs being harvested rather then lives being saved and I have attempted to explain why that will not happen. Hopefully the information is useful in allying either your concerns or those of other people who may have the same fears.

Sorry Sassybeast, I did not mean to upset/perplex you and I meant it when I said thankyou for the links.

I am all for saving lives, (that is why I have donated blood since the age of 18) and why the NHS can have whatever is of use should I die in an accident.

Over the issue of brain stem death my family can decide to donate my organs or not.

Serin - it is this kind of scare mongering about ghoulish Drs just waiting to pounce that puts people off registering in the first instance, and shows your ignorance of how organ donation actually works. Do you think that the ITU team are receiving bonus points for every set of organs donated???

Hate the idea of an 'opt-out' system - mainly because of so many other instances of government/central databases going wrong, it would be so easy for data to be entered wrongly or a computer error and your organs get taken when you specifically didn't want them to be (especially if that's core to your beliefs/religion).

BUT I think the topic should be given far more coverage or 'pressure' to make sure people remember the issue, understand it and are prompted to at least consider going on the register. Everyone should be actively asked to register (not just given a leaflet) at every sensible opportunity - in school, when you apply for/renew a driving licence, when you change GP's etc etc - down to when you take out a mobile phone contract or set up a direct debit, anything that gets to people regularly.

Havent read all the responses, sorry, but to the person who asked if a relative can opt out in spite of a card, no they can't. A donor card doesnt even need to be carried--the card is just proof to yourself that you are on the register, which will be checked in the event of possible organs. That register overrules any opinions any suviving relatives have.

I'm not being aggressive with this, but my mum has never given blood and never been on a donor register. When she was 35 she was diagnosed with lung problems including emphysema steming from her alpha-1 antitripsin deficiency. Now she will be 50 in 2 weeks and was given a new pair of lungs on Mothers Day. Should she not have been eligible for a transplant given that they could not take blood from her and that she was too ill for anyone to want her exhausted organs?
To that matter, what of cystic fibrosis patients who spend the majority of their lives very sick and weak?

Or do you mean only those of us who are healthy who dont given blood or carry cards but find ourselves suddenly in a position of needing a strangers organs to not be allowed them?

Personally I agree with those who suggest an opt out rather than opt in system, but in my heart of hearts I wish it was not an option at all. I know some people have religious reasons for not donating organs, but I honestly wish that any organ be up for grabs. People die all the time waiting on the donor list before even coming close to getting their organs. My mum finds it hard to think of the young person who's lungs she has; she thinks of it in terms of "someone had to die for me to get my organs" I tell her to think along the lines of "someone tragically died which is horrible, awful thing, but out of that came a chance for you to live a longer life"
I dont want to be flamed for this, its just how I view this because of my personal stand point and experience.

For what its worth, my whole family carry cards now and all who can donate blood and also put ourselves forward to as many medical trials as feasible in order to give something back to the medical world that has extended my mothers life and enabled her to have more years with us and her first granddaughter (DD)

Ok, I've rambled enough and when I post this I imagine the threads probably gone off on a tangent, so this will stick out of sequence, but oh well! Was compelled to write!

I just wanted to say, I use to be a blood donor and was on the bone marrow register and carried a donor card, sadly I am now one of those individuals who would be unable to donate anything as a result of serious chronic auto-immune problems.

I think its totally unreasonable and insensetive to condemn me and individuals like me to die simply because I am unable to reciprocate a donation!

How far would an ideas like that be taken, would it be a case of because I donated 10 units of blood while at uni many years ago that I would be entitled to use 10 units but thats my lot? It could get very complex.

I agree an opt out system would probably be more practical and beneficial in the long run, due to most peoples lazyness, they want to but dont bother letting family know!

But at the end of the day as some have pointed out even if YOU carry a donor card its still a decision made by your next of kin!

You are right that even with soft opt out the decision is left with the next of kin but it is a much easy issue to raise and decision to make if you can say ' so-and-so carried a donor card and wished to donate are you happy to carry out his/her wishes'. I have had to bring this up with relaitves and it is a very, very difficult thing to talk about when they are greiving.

serinBrightside, the only thing bright about you is your name!

What a fucking ridiculous comment "they could never be persuaded by the offer of many thousands of pounds to send one of my organs off to the Middle East/Russia etc"

It's ignorance like that which causes so many people to lose their lives in vain and so many to die on the transplant lists or have a terrible quality of life whilst waiting.

ITU teams and transplant teams are entirely seperate and do not have conflicting interests. My faith in the NHS is based on actual knowledge rather that some pathetic plotline in Holby City or other such crap which you have obviously been watching!

I think the OPs idea is in fact unreasonable, as it challenges the basic principle of care being given to those who need it, irrespective of their contributions (financial, being on the register, whatever).

And yet the idea has occured to me too, not in the sense of "if you are not on the register, you cannot receive organ transplants" but rather in the sense of "as there are not enough organs to go around, shouldn't they go first to those (if suitable) who are somehow more deserving?" Ideally, everybody gets the care they need. But if we need to choose who gets an organ and who doesn't, in theory perhaps there is really no better criteria than "is deserving/is not deserving". In practice, however, this could never work. For instance, how would we determine the extent of deserving? And also, organ transplants just don't work that way - very very rarely, if ever, is there an organ that could go to two absolutely equally suitable and prioritised applicants, who could then be distinguished by "degree of deserving".

However, whilst I think that the idea is unreasonable, I think it is great that it was raised here. I think quite a few people would happily receive an organ if they needed it but would not consider donating their own. Pointing out to people how self-centred this is - even by a discussion such as in this thread - must be a good thing. It is then still up to them to make their mind up. But at least they are then aware of what they are deciding.

I second that care teams do not have conflicting interests.

I've met lots of people who are worried that if they were presumed brain dead, doctors would start cutting them up rather than double-checking and trying to revive them. However, this is a huge fallacy. Consider this:

In the unlikely event that you are falsely thought to be brain-dead, but actually you might still recover; and you are NOT registered to donate; your life-support is turned off and you WILL be really dead in a very short time.
On the other hand, if you ARE a donor, life-support will stay on, and teams will do their utmost to keep your body alive for as long as possible, as this will give better chances to retrieve working organs. So by being a donor, you are giving your body MORE time to undergo a miracle recovery and you will get MORE support from medical professionals.

So, really, if you are worried about falsely diagnosed brain-death, the only thing you can do about it is to GET ON THE DONOR REGISTER!

You can't determine who is more deserving simply by the fact that one person is on the donor list and another is not. The person who is on the donor list could be a horrid person who makes their family's life a misery.
The person who isn't on the donor register could be a lovely person who is well liked and who is a regular volunteer.

The order of priority on the transplant list should always be determined by need not merit.

To give another extreme example the person who is not on the register could be a medical research scientist who will be able to continue to contribute to the wellbeing of others by being the recipient of the donor organ.

Or the person who is on the register may get only 5 months from the donor organ, the person who isn't could possibly get 5 years.

It isn't right for us to try to determine who is the most worthy patient,and really I don't think it's possible either because everyone will have a different idea of the criteria that should be used to determine someone's 'merit'.

I agree, Rock, and just for the record, that is NOT what I was suggesting. If it were, one might start arguing if someone who is "lovely" is actually more or less deserving than someone who is "not liked" but will willingly save someone else's life by donating organs? Or if someone is most deserving who pays more taxes? Volunteers? Or what? That's why I asked how it should be possible to determine who is more deserving. Also, it is all a moot point as clinical necessity must go first and there are never cases where equal necessity and suitability is given, so the question of what to do in that situation - how to select between to equally suitable and needy applicants - is rather hypothetical.

It is sad that so many people who really need a transplant don't get it. Why should A get it and not B? It is a lottery, and that's why the sentiment arises that there should be a better system, shouldn't there? Where the "deserving" rather than the "lucky" get their transplant? But though the sentiment is understandable, the lottery is still the best system we have. All we can do is increase the odds in the lottery for everyone, by going on the register ourselves and convincing friends and relatives to follow suit.

I don't know about not getting a donor organ if you're not on the list, I don't think it's as simple as that.

I am on the organ donor register but only by accident. I recived a letter and a little card in the post one day saying thank you for registering but I hadn't so I called them to ask how it had happened, they didn't have a clue and asked if they should take me off, but I said to keep me on as it's a good thing to do and I was only calling as I was curious as to how I got on the register in the first place.

I would have been on the donor register years before as it's a good thing to do and possibly the right thing to do too, but it wasn't something that I ever thought about, and if I did think about it then trying to find the website site or making that phone call is something that would happen after I sorted out 3 dc's the washing, cooking and the other hundred million things that have to be done in a day.

I'm sure that's typical of a lot of people - they just don't get round to it, does that mean that they shouldn't get an organ donor if they (or I) needed one.

Though I'm sure a lot more people would bother to register if it meant that was the only way you'd get a transplant, but even so a lot of people still wouldn't get round to it.

So,