Proposal that people with donor cards are given priority over those that don't when needing an organ?

(252 Posts)
angelos02 Thu 11-Jul-13 11:21:01

DM Link if you want more detail:
www.dailymail.co.uk/news/article-2359972/Is-fair-dont-Organ-donors-jump-transplant-waiting-list-NHS-plans-boost-donation-levels.html

I can't see why anyone would argue against this. I do think an exception would have to be made for people that can't be donors due to medical reasons. Apart from that, why on earth not?

Priority should be on medical need only. Not judgement.

Maybe they wanted to be a donor but family objected. Maybe they forgot. Maybe they don't want to be a donor.

Doesn't matter.

Who needs it most, gets the organ.

itsallshitandmoreshit Thu 11-Jul-13 11:27:35

Sounds fair to me.

angelos02 Thu 11-Jul-13 11:29:49

If their family's opinion is opposed to donating organs, then I assume they are equally opposed to receiving organs?

I think it is a good idea as it may encourage more people to carry donor cards. 3 people a day, die waiting for organs.

PavlovtheCat Thu 11-Jul-13 11:30:09

I don't like that idea. I can't put my concerns/thoughts about it into words yet. It just doesn't sit well. Let me think about the reasons. But gut instinct says it feels wrong.

PatsyAndEddy Thu 11-Jul-13 11:31:20

People have choice over their bodies and long should that remain the case.

PatsyAndEddy Thu 11-Jul-13 11:32:54

That's an incorrect assumption though.

I can't articulate this properly but it doesn't sit right. We, as human beings, cannot dictate what people do with their bodies before, during or after death. We just can't.

TanglednotTamed Thu 11-Jul-13 11:33:12

I am on the donor register (to give, not to receive, I mean!) and don't think I should get priority if I need a transplant - should be medical need.

Otherwise you get into all sorts of territory. What about people who are willing to pay? Should they get priority?

CarpeVinum Thu 11-Jul-13 11:33:18

I haven't read the link, but where would that leave children or very young adults who may not have been making their decision independently and free of coercion ?

I would prefer an opt out system, where you had to declare yourself a non donor and put yourself on a non donor register rather than an opt in system.

I am not sure I am at all comfortable with the idea of making that punitive whereby if you opt out of donating you also opt out of being a recipient.

I kind of feel it ought to be a purely medical decision based on likelihood of success in the short, mid and longer term, and urgency of need ....rather than "oh dear, you die cos you picked wrong when you thought you were immortal or these things only happen to other people".

That's a big price to pay for the crime of an uninformed and knee jerk choice.

I'd guess people opposed to donation because of careful, considered, or profound moral issues with the concept would be opting out in either direction anyway.

Maybe if we went for opt out not opt in there wouldn't be such a shortage and an idea like this would be superfluous to requirements anyway.

NeoMaxiZoomDweebie Thu 11-Jul-13 11:33:35

YABU some people's religion will not allow them to donate organs. Aside from that, as someone else said it could be an oversight that they're not donors.

mimitwo Thu 11-Jul-13 11:33:41

Message withdrawn at poster's request.

jeee Thu 11-Jul-13 11:34:25

Getting a transplant is not some kind of reward for good behaviour. It is, and should remain, purely a medical decision.

WhenSheWasBadSheWasHopeful Thu 11-Jul-13 11:34:35

If it helps improve organ donation then I agree.

Also agree that if families are anti donating then it stands to reason they would be anti receiving too.

Jengnr Thu 11-Jul-13 11:34:50

Absolutely not.

The donor system should be opt out, rather than opt in though.

ThingummyBob Thu 11-Jul-13 11:35:53

YABU.

I wish more people would register as donors but I cannot imagine it not being a free choice to make.

The feelings of family members or really not relevant. What if someone has no family?

I also imagine that many donor recipients cannot be donors themselves for medical reasons so seems ill-thought out at best hmm

Recipients of organs should be on a medical priority basis as nothing else is fairer.

samandi Thu 11-Jul-13 11:36:38

Hm, I do wish there was an option where I could choose not to donate my organs to those that aren't prepared to do the same. Sadly, there isn't.

PatsyAndEddy Thu 11-Jul-13 11:37:01

I agree with the opt out argument. But you jsut can't reward people for donating therefore penalising those that don't in this way.

It's rather chilling.

Justfornowitwilldo Thu 11-Jul-13 11:37:24

Donation should be opt out not opt in.

TheSmallPrint Thu 11-Jul-13 11:37:42

I find this quite distasteful to be honest. Priority should be on need not what you're prepared to donate in return - it's not swapshop.

WhenSheWasBadSheWasHopeful Thu 11-Jul-13 11:38:23

neo I recently spoke to a nurse involved in promoting organ donation. Virtually all her talk involved religious views on donation, she said there is no religion that bans organ donation.
There are religious leaders (usually older and more traditional ones who are against) but she said most religious leaders say there is no problem with organ donation.

I'm no expert on this by the way, I just had a really interesting chat with a nurse involved in organ donation

PatsyAndEddy Thu 11-Jul-13 11:38:50

I don't think you can attach conditions to gifts like that though.

I might not like my liver going to an alcholic who might just carry on drinking (just examples btw, not my views) or to someone who has commited some awful crime but if I choose to give I give freely, without condition.

angelos02 Thu 11-Jul-13 11:38:57

Neo surely if someone's religion won't allow them to donate then equally they would not receive an organ. I don't have words to express how I feel about someone that would take an organ but not prepared to give.

JaquelineHyde Thu 11-Jul-13 11:41:29

What an utterly ridiculous idea.

I for one would not want to donate my organs based on this criteria.

I want organs of mine to go to the recipient with the best possible chance of successful transplant, not just to the person who remembered to go on the donor list.

What next, no lung transplants for smokers, or liver transplants for drinkers. After all these are choices just like being on the donor list.

This makes me so angry

FyreFly Thu 11-Jul-13 11:41:39

Of course it shouldn't be like this! Deciding to donate your organs after death is a deeply personal decision. It is a gift which must be given freely, not taken under coercion.

Medical need must be the ONLY deciding factor. Whrre you have two organ donors needing transplants, do you pick the drug addict whose life is in most danger or do you pick the "deserving" paediatrician who spends his weekends helping at a soup kitchen and could live a few more months yet? The concept of "deserving" should never come into it, or we will end up with organ donation by coercion, which is very, very wrong.

mimitwo Thu 11-Jul-13 11:43:35

Message withdrawn at poster's request.

specialsubject Thu 11-Jul-13 11:45:47

no, not thought through - some people cannot donate due to medical reasons.

however anyone who opts out as a non-medical choice, including for religious reasons, should not be eligible to receive.

mimitwo Thu 11-Jul-13 11:49:05

Message withdrawn at poster's request.

VodkaJelly Thu 11-Jul-13 11:49:20

OP, what if your child and another child needed a transplant. You and your family are on the donor register and the other child isnt. What if the donor decided he/she didnt want their organs going to someone who IS on the donor register as they dont believe in this new "law". Would that be fair?

Transplants should never be judged on who is on a list and who isnt.

I pretty much agree o anything that boosts organ donation but I'm bias, I have a son who is highly likely to need a new pair of lungs in the not too distant future.

The opt out thing is clearly the best way forward though.

PatsyAndEddy Thu 11-Jul-13 11:49:56

I'm not registered.

There's just something about it that doesn't sit right with me and the relentless campaigning seems to have an opposite effect of me. It's my body, I don't like to think of it being cut open and passed around as soon as I pass. I just don't.

But, logically I know it's a good thing to do and will get round to it. There is no argument not to really other than how I feel about it which is personal to me.

If something happened and I needed a transplant tomorrow would I take it?

In an instant.

CarpeVinum Thu 11-Jul-13 11:51:31

What next, no lung transplants for smokers, or liver transplants for drinkers.

I think there are limitations placed on people who do stuff that would impeed the success of the transplant. I may have got that idea from Holby City/Casualty though. So it might not be particulary accurate. But think it was still based on a medical not "moral" requirment, in the sense that still drinking alcoholics and still smoking hard of breathing people would be less likely to survive longer term with a transplant than those who had kicked or didn't have habits that lower sucess rates. But I don't think they take them off the list, they just slip down in priority.

Or something like that.

CarpeVinum Thu 11-Jul-13 11:55:00

I carried a donor card in the Uk, but have to confess I have not the vauguest idea how to opt in here in Italy.

DH and DS both know I want all and everything useful to be taken. However I think it's still better to do it offically.

<pootles off to google to deal with info gap>

GoodTouchBadTouch Thu 11-Jul-13 11:55:24

Im much more worried about the family not having the final say. Im not on the register and don't plan on it, the way I think is that my husband can decide depending on how he feels at the time.

I think it will stop people signing up.

I don't think Id be happy to offer my children or husband for spare parts.

I particularly hate the idea of their organs going to supposed re-formed druggies.

Does that mean me and my family should come further down the list should we need a transplant? I guess so, seems only fair

I don't agree with this. Organs should absolutely be allocated by need alone, judgements shouldn't be made about how morally 'deserving' they are.

On a practical level, at the point when you require a donor organ your organs aren't likely to be much use to anyone else anyway, so it's not as though you will be likely to actually be able to donate them if the worst happened. I know the idea is to get more people on the register, but there are better ways of doing this.

I completely agree with an opt-out rather than opt-in system.

BookieMonster Thu 11-Jul-13 11:56:18

What about children?

The key word there goodtouch is 'reformed' people who made mistakes but rectified them....

Jesus I'm gonna hide this before the rage gets me. angry

CarpeVinum Thu 11-Jul-13 11:57:49

Oh it's ok, we are presumed opt in if nothing written can be presented by the family to demo opting out was declared during lifetime.

And, actually, only being eligible to receive organs if you are prepared to give them is kind of a trade. Any kind of trade in human organs sits very uneasily with me indeed.

BrokenBanana Thu 11-Jul-13 11:59:18

So you'd take someone's organs in an instant but not give any away when you die Patsy hmm how very generous of you.

I'm down to donate if I die but I would want my organs to go to whoever needs them most, even though I can't get my head around why anyone wouldn't want to be on the list to give.

I do not agree with this new proposal, I think an opt out system would be so much better.

BrokenBanana Thu 11-Jul-13 12:03:15

I highly doubt this will ever happen anyway, it's just the DM shit stirring.

PatsyAndEddy Thu 11-Jul-13 12:05:58

Why the sarcasm and face? I'm being honest about my feelings here, feelings I find hard to square within myself, over my body parts.

I'm happy to discuss it but sarcy comments like that just grate - have you got anything useful to say?

GoodTouchBadTouch Thu 11-Jul-13 12:07:14

Sure tits, I know what it means, I just don't think Id be inclined to sign over a loved ones organs to someone like that. It must be a horrible decision to have to make when you've just lost someone and that is something which puts me off.

There are lots of stories of organs being wasted on alcoholics who carry on drinking after they have a nice new liver.

CarpeVinum Thu 11-Jul-13 12:07:45

Oh hey, something where Italy doesn't limp in the bottom of a league table !

<proud by proxy emoticon>

EXTRACT...The European scenario of deceased organ donation is extremely varied with a few nations with yearly donor rates over 20 per million population (pmp) (Spain, France, Italy, Estonia, Belgium, Austria, and Latvia); a major block of countries with yearly rates between 10 and 16 pmp (Ireland, Norway, Finland, Poland, Sweden, The Netherlands, Switzerland, Slovakia, Denmark, Lithuania, Germany, the UK, and Malta), and a few like Greece and Cyprus whose deceased donor rates fall below 5 pmp1

ec.europa.eu/health/ph_threats/human_substance/oc_organs/docs/oc_organs_061_en.pdf

CarpeVinum Thu 11-Jul-13 12:10:31

There are lots of stories of organs being wasted on alcoholics who carry on drinking after they have a nice new liver

A whole liver ? Are you sure, cos I thought these days people got a portion of a donated liver, cos it's the one of the few organ that can "regenerate" itself.

eccentrica Thu 11-Jul-13 12:11:51

yanbu. in conjunction with an opt out system and applied to over 18s only, it seems eminently reasonable.

if you opt out of being a donor, either for religious reasons or just pure selfishness (as in patsyandeddy breathtaking post above) those reasons apply equally to taking someone else's.

all the people on this thread saying they don't fancy the idea of someone else having their organs, but would happily be a recipient- the mind boggles.

it is not a 'trade' or a 'swap shop', it is choosing to participate in, or opt out of, a collective system whereby we try to help others live after our own deaths.

I disagree with this. I carry a donor card. This should not mean I can jump the queue for organs should I ever need one. Medical reasons only.

BrokenBanana Thu 11-Jul-13 12:15:27

have you got anything useful to say?
Yes, stop being so selfish and get yourself on the donor list.

JaquelineHyde Thu 11-Jul-13 12:15:47

Can I ask those of you who don't like the idea of donating their body parts exactly what it is you plan on doing with them when you are dead?

They will either be burnt and turned to ash or buried in the ground for the worms to eat...How on earth is that better than giving someone else (regardless of their history) a chance at life.

lustybusty Thu 11-Jul-13 12:16:29

I find this really difficult. In theory I agree, that you have to be willing to give in order to receive. (Based on choosing to/not to give, rather than medical ability. If a person is under 13? 16? 18? They can have anyway. If they cannot give because of medical conditions, they can have. Religious reasons? Tough shit. Likewise "I just don't like the idea of someone rootling round my organs". Well if you don't want someone rootling around to take your organs out when you're dead, you certainly don't want them doing when you're alive, do you?!) However in practice, I want my organs to go to the person that needs them the most. If (unlikely I know) there were two people requiring my organs, with exactly the same problem, at the same stage, etc (so identical requirements) I'd prefer they went to the one that had been willing to give over the one that wasn't. Having said that, I know it's so unlikely for that to happen, I'd rather it was a purely medical reason. And I'd rather my organs went to a smoker/an alcoholic than burned with me (again, assuming they were appropriate for noone else).
Also, yes, yes to opt out, rather than opt in. But I've apparently been on the register since birth anyway. Thanks mum and dad! grin

wonkylegs Thu 11-Jul-13 12:17:41

Personally think that donation should be based on medical need not conditions or bribery.
This may also be because I cannot donate due to medical condition / medication which makes most of me unusable. I was registered as a donor prior to being diagnosed/treated but I now would be unable to donate but have a greater need now due to the crappy condition of my body and the stresses placed on it by both disease & medication.
I think opting out would be a better solution than opting in as those who have strong feelings can decide not to but the apathetic are covered. I suspect more non donors are due to not getting round to it rather than strong personal feelings.

angelos02 Thu 11-Jul-13 12:17:44

It makes me sick that someone would happily take an organ 'in an instant' but wouldn't be happy someone having theirs.

I'd rather an alcoholic or heavy smoker that had a donor card got my organs than someone with Patsy's mentality.

lustybusty Thu 11-Jul-13 12:18:33

And with my mammoth post, I have cross posted with many similarly minded people. smile

PatsyAndEddy Thu 11-Jul-13 12:18:42

Is it so selfish to want my body parts though? Is it really?

See I just can'tbalance these thoughts out. Rationally I know, as far as I can know these things, that I'll have no use for them post death.

When I do choose to give, it will be unconditionally.

I'm just not there yet.

They are mine - it's my choice to make and so it should be. I understand that's not comfortable for some people but what can I say?

PatsyAndEddy Thu 11-Jul-13 12:19:30

But I think you're worse for attatching conditions onto something you should be giving with no conditions attached.

lustybusty Thu 11-Jul-13 12:20:34

patsy I think it's about the dual standards - "you can't have mine, but I'll have yours"...

angelos02 Thu 11-Jul-13 12:22:04

Patsy At least I'm on the donor register. Better that than not. I know which of us has the moral high ground here.

I have no control over who gets my organs. That will be down to the rules when I die. Doesn't stop me having an opinion on what I would ideally like to happen.

PatsyAndEddy Thu 11-Jul-13 12:22:47

And it's not that I wouldn't be happy with someone having mine. I would be. I just can't make sense of the whole thing. I have rational views on it but, I'm not going to call not wanting to give organs irrational but I have opposing thoughts on what I want to happen with my bits.

PatsyAndEddy Thu 11-Jul-13 12:23:31

It is dual standards, you're right.

There's no moral highground at stake here Angelos.

Not so sure they are yours anymore when you are dead though?

There is no longer any "you", You dont exist anymore. How can you own something? Your earthly goods is passed on. You cant cling to that. What use is your liver, or your heart?

I would be happy for my heart to keep beating, or my liver and kidney to keep performing their functions in the body of another person. If my kidneys or liver could give life to another person, maybe another mum with young children, it would be the greatest gift to me. It would make my soul happy. smile

So, my reasons for donating are in essence as selfish as Patsys for letting hers rot with her.

limitedperiodonly Thu 11-Jul-13 12:25:04

Some countries have higher rates for organ donation than the UK because they have worse road safety standards.

Of course, it wouldn't make such a good story if we said that British people were selfish for wearing seat belts and crash helmets.

GoodTouchBadTouch Thu 11-Jul-13 12:26:28

CarpeVinum - No, Im not sure, you may be right.

JaquelineHyde - Personally, I don't care what happens to my organs after I die. If it makes my husband feel better to donate them fine, but he should be allowed to wait and see how he feels at the time, therefore I wont sign the register.

jeee Thu 11-Jul-13 12:26:39

But Patsy, you don't really have much of a say as to what happens to you bits, anyway. There are three options: (1) they rot, (2) they burn, or (3) they are used to save another person's life.

I still believe absolutely that there should be no conditions, other than medical need, as to who gets a transplant.

eccentrica Thu 11-Jul-13 12:28:18

patsy you seem to not understand, what people find so offensive is the "what's mine is mine and what's yours is mine" attitude.

and as it goes, I think there is a moral high ground. or at least a moral low ground, and being happy to receive but not to give is pretty much the definition of it.

BrokenBanana Thu 11-Jul-13 12:28:44

Genuine question patsy, have you ever thought of how you would feel if it was you or your child, or a much loved friend or family member that was needing an organ donation?

IMO our bodies aren't really us iykwim, it's just a vessel that carries us through life. They may take my organs when I die but I'll still be here, just living through memories.

JaquelineHyde Thu 11-Jul-13 12:29:09

Patsy I think it is very brave of you coming on here and having an open discussion about your choices. I don't agree with your choices but I respect your right to choose.

I would like to understand why you feel the way you do, but I'm not sure you even understand it.

Anyway, I disagree with this new proposal and would happily give you my organs to help you live, even if you wouldn't give me yours.

PatsyAndEddy Thu 11-Jul-13 12:32:40

I'm not causing offence. I'm talking through thoughts I have on the issue.

If it was my child/family/friend I'd be tested in a second for a live donation if that was possible.

I'd hope they got what they needed from someone who had choose to donate. What else would I do?

You're completely right Quintessential

PatsyAndEddy Thu 11-Jul-13 12:34:43

Thank you Jaqueline and you're right, I can square my thoughts with myself and I understand it's not pallatable to openly say these things. But it is a choice. Like I say I'm not saying never just when it's discussed I sort of clam up and decide not to think about it anymore and don't sign up.

Opt out would be different, I wouldn't actually take the steps to opt out.

Strange.

BrokenBanana Thu 11-Jul-13 12:38:24

Maybe you should stop clamming up then and actually think about it, cos so far your reasons are shit.

You are of course entitled to your own opinion, but I have to say you come across as incredibly selfish.

PatsyAndEddy Thu 11-Jul-13 12:41:02

BB it's attitudes like yours that make this so hard to reason out. It's my body, my choice. No other aspect of medical treatment or decision is forced upon people in such a rude and agressive way.

I've explained my choice at this moment in time, explained I find it difficult but am not adverse the idea, have had reasoned and balanced responses and opened up discussions here but I really don't see the need for the insults.

SelectAUserName Thu 11-Jul-13 12:43:43

Patsy I don't agree with your views and haven't made the same choices as you, but I respect your honesty in articulating how you feel. I know some people who have ticked to donate anything other than their corneas, because they think "eyes are different".

I don't think there should be any conditions on receipt of a donor organ. I can't put it better than jeee did upthread: Getting a transplant is not some kind of reward for good behaviour. It is, and should remain, purely a medical decision .

I am on the organ donor register and have been for over 20 years, but I have also signed forms to donate my body to medical science (I have a comparatively rare condition which would benefit from further post-mortem research) which can be incompatible with organ donation. My wishes, which have been made clear to my whole family, is that if I die in a way which allows any of my organs to be harvest, then that is the priority. I would be extremely upset and disappointed if my family over-ruled my wishes (well, I wouldn't be because I'd be dead, but YKWIM).

GoodTouchBadTouch - do you not think it might help your husband deal with a situation which would be unbelieveably traumatic for him, if he had a clear indication of your wishes by you having signed the register? At the very least, I hope you have discussed it with him. Heaven forbid anything should happen to you, but him being asked about organ donation at the point he is being advised your life support machine needs to be switched off is NOT the first time for him to have to think about it, IMO.

SelectAUserName Thu 11-Jul-13 12:44:42

harvested

"Not so sure they are yours anymore when you are dead though?"

You are not always dead when the decision has to be made, or when preparation starts for harvesting.

Our NHS care should be without moral judgement, there are restrictions, obviously, because of a resource issues, but that should be as far as it goes.

Where would it end? Unless you donate for research, then you don't benefit from new drugs? You cannot get IVF etc, unless you donate/take part in research etc.

I am a donor and so are my children, but i had friends who were caught up in the Alderhey scandal and there should always be consent, even if some view the body as merely an empty vessel.

I take part in drug trials, as well as undergoing different procedures for research, but this should be of an individuals choosing.

The Bio Bank would like everyone, especially those with health conditions to take part in longitude studies, this involves sharing very personal information, so this would be a slippery slope.

Not everyone has the ability to rationalise these decisions, so they behave unselfishly, which then would mean that we are back to those with MH/LD's going without transplants, again.

BrokenBanana Thu 11-Jul-13 12:51:49

I didn't say it wasn't your choice. I was just giving my opinion on your choice.

I can't get my head round your way of thinking, how you would quickly take but not give and not even have any special reasons for it. It honestly baffles me.

jeee Thu 11-Jul-13 12:52:36

Patsy, my sister had two liver transplants. She died waiting for a third.

She had always believed passionately in organ donation, even when it was something that happened to other people. She felt that this helped her to come to terms with accepting an organ when she needed one.

I think people can become very angry on this issue. And I think it can be counter-productive to try to emotionally arm-twist someone to join the register. But there are real, very normal, people waiting for organs. And it may be your family in need tomorrow.

On a lighter note, my eldest DD was working on a pamphlet about organ donation for a school project. I did suggest that her slogan might need changing... "SAVE LIVES, DONATE TODAY!"

"he should be allowed to wait and see how he feels at the time"

My DH died from Cancer, i asked if there was anything that they could take, he was damaged by intense medication/treatment/disease.

I had chance to grieve and think, because he was ill for so long, but i can imagine that many do not have that opportunity.

I also had family to help my children, as if i had been on my own, then they would have been enough to deal with rather than think about donation.

His family didn't agree, but we had, had the conversation, before he was ill, donation was something that we believed in.

I think that we should be encouraging teenagers ti have these discussions, in school, they are given the chance to debate chosen subjects, to teach them debating skills.

This should be a compulsory topic, unless forbidden by religion/culture.

meddie Thu 11-Jul-13 12:54:26

Patsy do you think that your issues stem from the fact that thinking about donation would mean you have to consider your own mortality and a lot of people dont like to think about that?

I have no problems with being an organ donor, I just hope I don't go before my mum as she has stated that she would not allow me to be a donor, which hopefully these new changes will rectify. Its always annoyed me that she would be able to over rule my wishes.

PatsyAndEddy Thu 11-Jul-13 13:07:31

Perhaps meddie and I tend to buck the opposite way when backed into a corner. The guilt laid on and lack of free will which is around the issue always gets my back up. I can't think of any other scenario where people are forced to think one way or risk getting called selfish etc.

Does that make sense? It's an act of giving that people aren't given the free choice to decide for themselves whether they want to or not. Or rather they are given that choice but the weight of criticisim when they choose the wrong choice kind of outweighs that initial perception of choice.

My friend had really long hair, like down to her bum. She got it cut to just below her ears and donated it to a charity for cancer wigs. How can you not think that's a great thing to do? It is, totally was. But no one expects everyone to do it or calls people selfish for not doing it. Hair is useless afterall is it not?

I'm not comparing hair to a kidney but the point is it's free will over your own body.

BrokenBanana Thu 11-Jul-13 13:10:22

But you are given the choice of whether to donate and you've chosen not to. That's fair enough if that's what you want, but then to say you'd take someone else's organs in a heart beat, that's what makes you sound selfish.

PatsyAndEddy Thu 11-Jul-13 13:11:29

But show me someone who would refuse?

PatsyAndEddy Thu 11-Jul-13 13:12:38

Only 1 in 3 people are registered to donate.

I don't think there's anyone (outwith this mystical religous reasons which no one ever expands on) that would refuse to have their own life saved.

BrokenBanana Thu 11-Jul-13 13:15:21

Like I said, I just can't get my head around why anyone would happily take organs but refuse to be on the donor list. It's greedy and selfish IMO.

ClaraOswald Thu 11-Jul-13 13:15:47

I believe Wales has just gone to opt out system. I an on phone and can't link. There should be something on BBC Wales need about it.

PatsyAndEddy Thu 11-Jul-13 13:16:59

But they're not your thoughts to understand are they?

ClaraOswald Thu 11-Jul-13 13:18:21

From 2015 Wales will be opt out.

Chiggers Thu 11-Jul-13 13:18:43

I'm on the register and have been for some time. I have a fear that when I die, my family (DH/DS/DD) will say no to my organs being donated, due to their grief.

I am seriously thinking about getting a will made where part of it states that organ donation is a must after my death and so, my family will have to go through the courts to be able to refuse my organs for donation. It would be peace of mind for me as I've always believed that the most respectful things to do for a dead person is to make sure their last wishes are carried out.

PatsyAndEddy Thu 11-Jul-13 13:23:17

Isn't time very much of the essence though Chiggers? Isn't there a need for organs to be removed as soon as possbile.

That's another aspect I can't get my head round. I've been there at the end of life for both my grandmothers. I was holding their hand in a quiet room as they slipped away. It was horrible but lovely. The thought of someone looming waiting to start taking bits out of me whilst my children/husband whoever are saying their goodbyes is awful to me.

primallass Thu 11-Jul-13 13:24:41

I do sort-of agree with the proposal - either opt in or out, for both donating and receiving. You are in the system or not, With exceptions for under 18s, people with medical reasons etc.

BrokenBanana Thu 11-Jul-13 13:28:06

I agree that thought isn't very nice patsy, but I just try to think of saving someone else's life if mine can't be saved. It wouldn't make sense for 2 people to die when the unavoidable death of the first person could save the life of the second person.

merlincat Thu 11-Jul-13 13:29:52

Thanks OP, your thread has just prompted me to join the donors register, it took about 30 seconds. You may have even saved a life by doing so.

ZZZenagain Thu 11-Jul-13 13:33:28

I don't have a donor card but the proposal seems reasonable to me, unless it involves a whole lot of paperwork and slows things up. I suppose the main Thing is that whoever needs help urgently can get it but there too with all the administration and so on, who can say which Patient has the most immediate need.

Have never really thought about organ donors before.

RoooneyMara Thu 11-Jul-13 13:34:37

I'm fine with it. For myself at least.

I think I have an old donor card somewhere but actually, I don't really want to be given someone else's organs - and I'm not entirely sure I want mine to be distributed, I don't know, it's not a thing that sits well with me.

But I certainly don't expect to be given someone else's. I'd rather not...I'd rather they went to someone who really wants them, believes in the system, feels desperate to go on living.

if I have to die because I've fucked up my body, or been unfortunate enough to get cancer etc then that's ok. I don't want spare parts, I just don't - there are so many of us on the planet without recycling the dead ones too.

But I am speaking very bluntly here, and I don't think that my view reflects that of most people and I have NOTHING against other people either giving or receiving organs. Hope not to cause any offence.

ZZZenagain Thu 11-Jul-13 13:35:46

I suppose if you are not troubled about receiving one for yourself, maybe the question to consider is whether you would want organ transplants for your dc. I think I would.

RoooneyMara Thu 11-Jul-13 13:37:58

I thought about that - and honestly, I feel a bit like the possibility of it is setting a lot of people up for disappointment - of course it is very clever but until the chances WITH a donor organ improve, then it just feels so sad that people are pinning their hopes on something that might well not work.

I think for my children that is up to them and I'd support them in whatever way I could but I don't feel SO strongly about it.

PatsyAndEddy Thu 11-Jul-13 13:38:21

But rooney where do you draw the line with that train of thought? Would you refuse chemotherapy or the likes?

oxcat1 Thu 11-Jul-13 13:41:34

Those who say that they think it is wrong because you simply might not have had the chance to consider it yet - consider it now! You never know when you might get hit by that bus, and yes, two people might die just because you hadn't thought about it yet.

I'm writing as someone currently undergoing assessment to see if eligible for a lung transplant. The hard fact is that there are not enough organs available. What this means, in reality, is that the doctors are not deciding on medical need, but on likelihood of survival/best possible outcome. So, if there will plentiful organs, the surgeons would decide whether or not an organ was the best chance for me, and then put me on the list to see whether some suitable lungs came up in time. I'd have nothing to lose - I am going to die anyway, and the surgeons could give me the best shot at survival by giving me some suitable lungs.

As it is, I'm not a great candidate for a transplant, in that the cHnce of success is relatively low. I had lung surgery in the past, before my condition was correctly diagnosed, so it may now be difficult to remove my lungs. For me, the best chance of survival is a lung transplant, but there aren't enough, so the surgeons are choosing between me and somebody else, who might have a better chance of the transplant being successful.

That is a difficult one to get my head around. My only chance of survival - and admittedly it is only a chance - is not happening purely because there are so few organs that surgeons choose between me and someone else. Quite rightly, but neither of us chose these conditions, neither of us created them or exacerbated them, and just circumstance has left us where we are. I'd love to say to the surgeons "I'm going to die anyway, you give it your best shot", but because of the shortage of organs, that is not for me, or even them, to say.

Sorry for the length. A rather personal matter, as I''m sure you'll see.

RoooneyMara Thu 11-Jul-13 13:43:40

I may do. I don't know.

You know when you're a bored kid and you're playing patience, and well, you find you're at a stalemate - and so you make up a new rule?

Well transplants, to me, seem to fall into that sort of analogy - like, all else has failed and perhaps it is the end of the line, but hmm, you can borrow from the Aces or turn a card that's not a picture - I don't know, I wonder if sometimes, it's right just to let people go, to accept it is game over?

I make no pretence to be right on this. It is what I feel for myself, and I assume that I'm the weird one and everyone else is sensible and right.

I certainly don't think other people should pass up the opportunity if they want to take it. But I would rather go quietly than have that treatment.

AuntieStella Thu 11-Jul-13 13:45:04

I think it would be totally wrong to arrange waiting lists on anything other than clinical need.

For this, or for anything else.

RoooneyMara Thu 11-Jul-13 13:46:24

Oxcat - I am really sorry for my crossed posts there, and hope I have not offended you. (or anyone else)

I actually find the thought of your having a transplant very exciting - it is wonderful that they can do it - and I wish you the very best.

As I said, it is only a personal viewpoint that I don't think (and can't be sure - lucky enough never to have been tested on that) that I would want to do it.

The thought that I'd be less of a priority if I didn't want to donate, actually takes some of the guilt away, for me. I don't want to feel that I am being given something I'm not fully prepared to give.

FairyJen Thu 11-Jul-13 13:55:43

pasty firstly I commend you on your honesty. I put your opinion across on an almost identical thread a while back and got a proper roasting. I was called all kinds of nasty things etc with posters saying they hoped I would never get a transplant and such. I think you have been lucky in the response you have had.

To the others, it's fine to be online stating your on the donor list however your deluding yourselves if you think there are only a minority of selfish non donors. There wouldn't be such a shortage if it was only medically exempt people not signing up.

This proposal is only going to make things worse I think. I will not be forces into making a choice about my body by anyone, I shall decide for myself and that includes giving or receiving

eccentrica Thu 11-Jul-13 14:12:53

patsy no one is forcing you to do anything. if you find the whole idea of transplanting organs from one body to another so disgusting, that's your prerogative. you can opt out of the whole organ donation system. fine.

there's this weird idea that it's somehow 'brave' and admirable to express thoroughly selfish, self-serving, "I'm alright jack, fuck the rest of you" opinions on an internet forum. newsflash. that doesn't take courage. nor is it a fascinating enigma wrapped in a mystery. it's just selfish and sad.

eccentrica Thu 11-Jul-13 14:14:53

oh and I certainly hope that my organs go to someone who would do the same themselves.

Given my size, my organs would likely go to a teenager. Frankly they can have whatever they like.

I'm unhappy with the "give to receive" principle - we disdain it for taxation and gift giving, so why does it suddenly become ok for organs?

I'd oppose plans to permit benefits only to those who've put in, too. It feels like the same argument. I want to live in a society where we give willingly, and the most needy get. Desert and need aren't always linked.

Besides, some of the most in need of transplants (eg CF patients) can't go on the donor register anyway.

lustybusty Thu 11-Jul-13 14:29:48

horry most of us up thread that kinda agree with the principle have said that if you CAN'T give (too young to give consent/medical condition) that's fine. If you CHOOSE not to give (religion/general icky feeling) that's less fine...

PatsyAndEddy Thu 11-Jul-13 14:32:16

I don't find transplants disgusting at all.

Cherriesarelovely Thu 11-Jul-13 14:37:22

What a ridiculously complicated situation that would be. I am on the register. I wouldn't dream of stipulating that my organs only go to someone who is also on the register. I think that is madness. There are so many reasons why someone might not be in the register (such as the point Horry just made about CF patients).

PatsyAndEddy Thu 11-Jul-13 14:39:06

eccentrica Considering only one third of those able to are on the register yet reading these threads you would think it was the vast majority, I think it's pretty brave to say actually I don't want to and here's why. It's obviously a conversation that's needed given the figures. Why should those that want to discuss it from the other side (not just the simplistic I'm on you all should be too side) be silenced through fear of appearing selfish?

Tell me one other aspect of life where people are made to feel that way, or phrases like sad or self serving are used, when someone refuses to do something optional?

Latara Thu 11-Jul-13 14:39:45

I don't think I can be on the register (I take lots of medication) - is that correct?

lustybusty Thu 11-Jul-13 14:44:10

latara why not go on it anyway? Might be they can only use a tiny fragment of your liver, or it might be that (god forbid) if or when your bits were required, medical science may have developed the ability to "wash" drugs out of organs, or something.

Latara Thu 11-Jul-13 14:47:04

I may do that then.

angelos02 Thu 11-Jul-13 14:48:27

I think it is simple...you either agree with organ donation or you don't.

If it is religious, cultural for personal reasons or whatever, that is entirely your choice. I think it is wrong for people to not want to donate and yet happily take an organ from someone else. It is almost as if you are saying your body is more valuable than someone else's.

PatsyAndEddy Thu 11-Jul-13 14:53:23

But I could turn that right back to you.

You agree or you don't, means you can't attach conditions onto that which you are. You have to give to recieve.

It's not simple at all is it?

angelos02 Thu 11-Jul-13 14:58:12

I don't attach conditions - as I can't. Doesn't stop me from donating.

I also believe that my liver is better off in an alcoholic's body to keep them alive, than it is in the ground with me or incinerated in a crematorium.

FyreFly Thu 11-Jul-13 14:58:51

For what its worth, I dont think people who choose not to donate are selfish any more than someone who buys a chocolate bar instead of putting 50p in a charity box, or someone who keeps both of their buy 1 get 1 free deal instead of giving one to a food bank, or who decides they want to be an accountant instead of a doctor. Humans are inherently selfish, nothing wrong with it!

Nor do I want to see an opt out scheme. What I would like to see is much more awareness - for instance every time I go to the docs im asked if I smoke - why cant they ask about the donor register too? Would take all of 5 seconds.

And I say that as someone on the donor list and as part of the Parkinsons Brain Bank scheme.

Personally, I find all this screeching about selfishness very tasteless and holier-than-thou. It is not your body, so it is not your choice, and that is the end of it. Noone has any right to make someone else feel lesser because of differing personal choices. We do not tolerate it with abortion, we should not tolerate it here.

lustybusty Thu 11-Jul-13 15:01:11

patsy I really, really, don't mean for this to sound arsey, I really don't, but it may do, so I apologise in advance if it does...
I am wholeheartedly for organ donor ship. I would prefer an opt out system (where, from birth or 13 or 16 or whatever, if you are in a position to give and someone is in a position to receive, your organs are automatically donated, unless you say otherwise) rather than the current opt in system. I would also prefer, that if there were two identical people in the organ donor register (in terms of compatibility, likelihood of transplant taking, lifestyle choices, likely longevity post transplant), that someone ON the register took precedence over someone that wasn't. (That is statistically so unlikely thoug, that is realistically a moot point). Those are my general feelings.
Can you explain yours to me? You've said in this thread that "it just doesn't sit right" and "I don't find transplants disgusting". To me, personally, I find it difficult to match those two opinions. And, if you are willing to spell it out to a stranger on the Internet, you may find it clears it up in your own head (and to be honest, I don't mind if you decide yes or no, it's unwillingness to make a decision, in any area of life I can't stand. Make a decision, change your mind, say you're wrong, don't mind, but make a decision!!)

lustybusty Thu 11-Jul-13 15:05:22

But fyrefly all your examples are for whilst you're still living... Yes I am a selfish, live human being. I buy chocolate instead of giving to charity. I'm not a dr. I keep my BOGOFs. But if I can do one thing (which, lets be honest, affects me in no way whatsoever) to be a selfless, dead bunch of cells, why not?

jeee Thu 11-Jul-13 15:09:51

Patsy, if you were walking by a lake and watched a boy drowning, although you could have saved him by reaching out an arm at no risk to you, you would (correctly) be described as selfish. You aren't criminally culpable, but you're undoubtedly morally culpable.

I don't think it's an unreasonable analogy with organ donation.

But you still have the right to refuse.

FyreFly Thu 11-Jul-13 15:14:56

I used those examples because (other than the doctor one) they don't affect you detrimentally even if you are still alive. If you have an unexpected BOGOF (love that word) and dont need it then surely the non selfish thing to do is to give it to someone who does? Likewise if you find a tenner on the ground. Assuming youre not struggling, its nice for you but you dont need it, just like you dont need your organs after death. Therefore, using logic seen on this thread, surely what you should do is give it to charity?

FyreFly Thu 11-Jul-13 15:19:00

The difference there jee is that people dont die from lack of organs, they die of heart failure / cirrhosis / kidney failure etc. Saying that not donating is akin to condemning someone to death is way too far. You cannot hold individuals culpable for someone elses lung /liver problems!

lustybusty Thu 11-Jul-13 15:22:33

fyrefly true. But... I only buy BOGOFs when they work out cheaper than 2 of my usual items (so I do need both) and when I find a tenner, it tends to go in the nspcc box at tescos. However, this still does impact on your living life. Unless you are struggling to spend all of your monthly income, that extra BOGOF or tenner could take the kids to the cinema, or buy a bottle of wine to share with a friend, or provide the petrol to go and see a sick friend... Still making a difference to your living life.

jeee Thu 11-Jul-13 15:23:00

Fyrefly I'm sorry, I have used an over-the-top example - and I do try not to get too emotional on these kind of threads. I don't think trying to guilt trip people into going on the register is ever a good idea. But now I've done just that.

FyreFly Thu 11-Jul-13 15:28:59

I agree, it can. But I think my point is that being selfish is a personal perogative, and not always a bad thing. As I said in my previous post, im on two registers, and am v pro donation. But I do really hate the venom on here to those who have made the "wrong" choice in what is ultimately a deeply personal matter. Again, as before, I dont believe anyone has the right to make someone else feel lesser over something so personal. I signed up to help people, not to give myself kudos and a superiority complex.

I believe the system should be opt out, not opt in.
My mum received new lungs 4 years ago so I am a big believer in donation.

However, I would never agree to this suggestion that only those deserving of organs should receive them. Medical priority is the key, nothing else matters.

FyreFly Thu 11-Jul-13 15:33:24

Jeee it is a deeply emotional, personal topic and extreme rhetoric is bound to come out. Dont worry about it smile Like you I dont think guilt tripping (ie donate or you cant have one) is right, but I would really like to see so much more awareness of it. Did they ever run a tv advert like the give blood one? That would be good. Plus education in schools / asking at gps etc.

lustybusty Thu 11-Jul-13 15:35:39

I'm the same. I don't want to guilt trip people into it, but I do want "meh" people to think about it. And as I mentioned earlier, even if they WERE to introduce the "only receive if you are on the register" thing, as long as clinical/medical need was priority (it has to be, surely?! Shit, hadn't even thought about it from an angle of "if you're not on the register you're not on the list" - that's horrible), the likelihood of there being more than one person on the list with the same requirement is pretty close to zero (I think).

Honsandrevels Thu 11-Jul-13 15:55:00

I've had a liver transplant so clearly I'm pro-donation. People end up needing a transplant for all sorts of reasons and if you attended a follow up clinic appointment you'd see people of all ages, races and classes who have been unfortunate enough to have an illness that destroyed an organ.

I went from seemingly healthy to having a transplant in 5 weeks. Mine was an undiagnosed genetic issue but don't be fooled into assuming these illnesses only happen to other people.

I don't like the sound of this proposal even though I was on the register at the time of my transplant. Clinical need should be paramount.

Oh and liver transplants are not always split livers. It depends on all sorts of factors about who is on the list, tissue matches. Etc.

SelectAUserName Thu 11-Jul-13 16:30:12

I think one of the reasons there is such a low sign-up to the register is because a number of people will have held a donor card for years, pre-dating the set-up of the online register, and probably assume (due to the lack of general public awareness / 'push' from the medical profession / Parliament) that they don't need to do any more, IYSWIM.

FasterStronger Thu 11-Jul-13 16:33:18

i don't care if people need guilt tripping/pressuring into going on the donor list.
its not a big deal to go on the list. probably your body wont be used and if it is - you are dead so who cares?

but its a big deal to people whose lives are saved/changed.

CrapBag Thu 11-Jul-13 16:34:19

No way. Don't agree at all.

Violinsqueaks Thu 11-Jul-13 16:46:43

This is a very emotive issue for me. DH suffered kidney failure when I was pregnant with DD and DS was only 3. He spent a year on dialysis and after loads of testing he got on the transplant list, don't be fooled into thinking that it is easy to get on the list even if you need a transplant. You have to be "we'll enough" to get through the surgery. I was able to be a living donor for DH and it has completely changed our lives, he is now healthy again and has a good chance of living to see the kids grow up. I am of course registered as a donor and when I am dead they can use any bits of me that would help someone else. Deciding on a recipient should in my opinion be based on medial need only.

CloudsAndTrees Thu 11-Jul-13 16:47:59

I think this proposal is disgusting.

Organ donation should be a gift, bot something people are emotionally blackmailed into. I wouldn't want to receive an organ on the basis that someone had put themselves on the register out of fear that they might need one and wouldn't get one.

I think the idea of protecting a donors wishes is a good one, so that family cannot overrule what a person wanted to happen to them after death, and while I'm not 100% behind a system of opting out rathe rather in, I do think it's acceptable.

But to basically tell people that their lives are only worth saving if they have the right religious beliefs or if they have the right thoughts and feelings about their organs being used after their death is just despicable.

Eyesunderarock Thu 11-Jul-13 16:55:47

I have a vision of Patsy in her grave, rotting gently through the years, clutching her festering organs and muttering 'Mine, my precious, all mine, no one shall have them. Miiiiine'

We've all got total donor cards, children too. What's left over will burn and be scattered to enrich the soil. I'm more than a sack of entrails.

Simply on principle, I don't think only registered donors and people with 'acceptable' reasons not to donate should be eligible to receive organs. On a practical basis though - I've heard stories where friends and relatives of a transplant patient all sign up to the register. That seems like a way where you get into a social or family group where donation hasn't previously been considered, or has been rejected as an idea - that's not going to happen if that friend or family member never received that organ.

Smudging Thu 11-Jul-13 17:03:42

Message withdrawn at poster's request.

Smudging Thu 11-Jul-13 17:04:07

Message withdrawn at poster's request.

mercury7 Thu 11-Jul-13 17:05:49

strictly speaking when you are dead your body no longer belongs to you because there is no 'you' left for it to belong to.

Those who are against the opt out system, do you also carry a donor card?

I am for the opt out system and I think that only people who are prepared to donate organs should be able to receive them

CloudsAndTrees Thu 11-Jul-13 17:12:23

Smudging, a person who wouldn't donate an organ to you may well do other things that you or your children could benefit from. They might do a lot of charity work fundraising, or volunteering to do a job that desperately needs doing for people, but that wouldn't get done if they didn't do it for free. They might donate bone marrow, and still not want to donate their organs when they die.

We don't measure a persons value and contribution to society based on whether they are on the organ donation register or not, because it would be wholly inaccurate.

Being on the register does not indicate altruism in any other area of life. Some of the small minded views on here prove that.

The decision on who receives an organ should be on medical grounds only.

Once we start bringing judgement into this, we will quickly have problems. Who then makes decisions on who is more deserving, or who has contributed more to society, or the 101 other reasons to judge people?

Clinical grounds only, I feel any other method is open to abuse.

OnIlkelyMoorBahtat Thu 11-Jul-13 17:19:56

Medical need only - and I say that as someone with a donor card, and who would welcome the opt-out system. I think the idea that is something like the "deserving sick" (like the "deserving poor") is absolutely despicable.

GreenSkittles Thu 11-Jul-13 17:20:05

I really feel it would be better if organ donation was something you had to opt out of.

What are the stiplautions on this, because surely if someone found they needed a transplant they could get a donor card and apply to be on the register that same day.

mercury7 Thu 11-Jul-13 17:25:07

I agree, it should be quid pro quo
I appreciate people get upset thinking about their organs being used, but rationally we all die and once you're gone you aint gonna be there to get upset about it.

Those who prefer not to donate organs..presumably they feel it is somehow wrong or distasteful?
That being the case non donors would not want to be recipients, because surely it would be hypocritical to participate in something that you feel is wrong.

mercury7 Thu 11-Jul-13 17:29:07

things like 'it just doesn't sit right'
are not arguments against organ donation, they are knee jerk reactions, and again I'd say, if it doesnt sit right you wont be wanting a donor organ if one of yours fails now will you...

bakingaddict Thu 11-Jul-13 17:34:51

I kind of echo Patsy's thoughts...I especially have an uneasy feeling about the opt out system. It seems to me a bit akin to state sanctioned ownership of my body parts. The choice to have my organs removed will be for my family to make at the point of my demise. I have no problem with my organs being used but you must seek permission from those closest to me. I wont care, i'm hardly likely to be needing them wherever i'm off to.

I thought that even if you carry a donor card, permission must be sought anyway from next of kin. Without their approval it's unlikely to go ahead. Maybe i'm wrong and the rules have changed

eccentrica Thu 11-Jul-13 17:45:59

bakingaddict If you don't like the opt out system, then you... opt out. That's the point.

It has been shown time and time again that the vast majority of those not registered as organ donors just haven't got round to it. When you put the onus on those choosing not to donate, rather than on those who choose to donate, the number of organ donors massively increases.

Essentially you're balancing "ooh it feels a bit icky, they're my organs, MINE MINE MINE" against someone having the chance to live, perhaps a chance for some children to have a mother or father when otherwise they wouldn't.

It's all very well saying that those too ill to donate would be exempt, but realistically the vast vast majority of those needing a transplant would be ineligible to donate. Only in a small proportion of cases could someone possibly be eligible to donate something and yet be ill enough to need a transplant.

All that would happen would be that someone would need an organ, quickly sign up on the donor register to make sure, and what bloody difference would it make?!

eccentrica Thu 11-Jul-13 17:50:03

i am still astonished that anyone would have the sheer effrontery and gall to defend the stance that "I won't donate to anyone else but I would grab someone else's organs if they were offered to me".

Of course I realise that there are people who are that venal and self-interested, but it amazes me that anyone would actually state it openly and defend it as if it's even remotely defensible.

bakingaddict Thu 11-Jul-13 18:08:04

Eccentrica...i'm aware of the concept of opt out

You yourself state that many people don't get around to becoming an organ donor so inversely there will be many who don't get round to opting out, doesn't mean the NHS can just go and plunder their organs. I don't have a problem per se with organ donation as I stated in my orginal post but I don't necessarily think opt-out is the way to go so your analogy of kids without a mother or father is a bit OTT and patronising.

Perhaps bigger campaigns for becoming an organ donor like with the HIV/AIDS adverts of the 80's and making it legally binding that anybody with a donor card can have their organs removed without needing consent of next of kin/family. Forgive me if this is already the case but I thought family still have to consent for organs to be removed even if you are on the donor register/carrying donor card

eccentrica Thu 11-Jul-13 18:16:40

baking It's not an analogy, it's the reality of what happens because there aren't enough organs to go round. Children lose their parents because not enough people are signed up to donate, even though many of those people aren't opposed to the idea. That's the truth.

If people feel strongly enough to opt out, they will. I think it's ridiculous to talk about the NHS 'plundering' organs, what an emotive and irrelevant word. What exactly do you think their evil motives are for this bodily piracy?

You said in your previous post that "I won't need my organs where I'm going", I don't really see how that squares with the idea of them being "plundered" - can you clarify? What use do you think your family will be able to make of them?

Like everyone else I've lost people I really loved and grieved painfully for them. I can't imagine that knowing all of their organs were rotting/burned with their mortal remains, rather than helping someone else to have life, would be a consolation.

mercury7 Thu 11-Jul-13 18:25:07

Eccentrica I totally agree with you, although I think it's no surprise that many people are just uncomfortable with this whole thing, it forces you to contemplate your own death, or that of people close to you

2beornot Thu 11-Jul-13 18:25:36

Apologies if someone has already said this, but isn't it the case that if you are a recipient then you cannot be a donor? In which case if we only gave to those who were willing to give in the first place we'd soon run out of donors. That's the non-emotional answer anyhow. Plus the sentiment doesn't sit right with me either!

SoupDragon Thu 11-Jul-13 18:33:52

It is a crap idea. Al transplants should be done by medical need only.

The right system is the opt out system. If you don't opt out then you clearly don't feel strongly about not having your organs used.

SoupDragon Thu 11-Jul-13 18:35:24

The idea that any medical treatment should be offered on on anything other than a medical need basis is utterly abhorrent.

bakingaddict Thu 11-Jul-13 18:39:33

It seems like an emotive subject for you and I can see that you are not really getting what I am saying. Let me reiterate I have no problem with organs being used after my death and i'm sure my family wont either.

What I strongly believe in is this an individual has domain over their organs/body parts and that to allow the state to collect organs because for a variety of reasons the person has not opted out is not a road I like the sound of.

What about the people who have reduced mental capacity and may not be able to give consent one way or the other. Should a fundamental right like deciding what to do with your own body after your death just be ignored for people like this. How do you propose to get around this ethical question? If they never fully understand what they are consenting to does that mean the NHS takes their organs anyway simply by default of their reduced capacity.

2beornot - most of them yes, though usually the lens of the eye can still be donated, sometimes other things like heart valves tend to go undamaged and can be donated, but most overall you're right.

It's nice that altruistic living donations are on the rise for kidneys and a liver has be done for the first time in the UK. Living ones last a lot longer than cadaver ones, maybe something to think about OP?

CloudsAndTrees Thu 11-Jul-13 18:49:48

Those who prefer not to donate organs..presumably they feel it is somehow wrong or distasteful?

ooh it feels a bit icky, they're my organs, MINE MINE MINE

Those are two almighty assumptions to make about why someone might be uncomfortable with the idea of their organs being cut out of their body after their brain has died.

One of the reasons I don't want to donate, and one of the reasons I would refuse permission if the decision was mine over my DHs or dcs organs is that I don't want us to be kept on a ventilator after we are essentially dead. If it were possible to allow a body to completely die, as in blood has completely stopped pumping even by artificial means, then I would be more open to the idea.

lustybusty Thu 11-Jul-13 19:14:47

littlespork thanks for those links, I've been on the bone marrow register for years, but to be honest, had never really thought about kidney/liver. Know what I'm starting tomorrow...

What affected me for a long time, and therefore meant I was reluctant to donate, are the tests used to determine death. Because, the person is on life support and you have a doctor in front of you telling you that person is dead when to all appearances they don't look it.

Apparently the death of the brain stem is the key factor. But I am sure I have come across at least one report that a person has made a recovery after the brain stem was tested and they were declared dead. I also saw a report that some doctors are querying whether testing the brain stem is actually the right way to determine death.

I have also struggled with the reports that anaesthetics are used when harvesting the organs. If a person is dead, do they need these?

And don't forget the influence that popular fiction has on people. There are many novels, tv programmes, films, etc, that in one form or another have featured the idea of someone being wrongly declared dead and who may or may not escape the peril of being killed for real.

I think donor reluctance is the modern equivalent of being buried alive, it's the question of "is this person really dead?".

And that is probably a big reason behind a lot of donor reluctance. It certainly affect me, but I'm happy to donate if the time comes.

lustybusty Thu 11-Jul-13 19:19:36

fryone at the risk of sounding flippant... If I wasn't dead before they turned off the life support, I sure as hell will be after they've taken what they need, and (not that I think this would happen) if I WERE alive by mistake, it'd be a quicker and more painless death than being buried alive....

BoneyBackJefferson Thu 11-Jul-13 19:19:39

Would those who think this is a good idea allow those that would be affected to reduce their national insurance contributions?

crashdoll Thu 11-Jul-13 19:35:09

YABU, this is a terrible idea. I am on the donor register. My organs come without moral conditions attached. Due to my medical problems, it is quite unlikely that my organs will be suitable but I am fully prepared to accept that they will go to someone selfish like a few of the above posters. I'm ok with that. I think they're selfish and hypocritical but if their organs are failing, I still believe they deserve the chance to live.

mercury7 Thu 11-Jul-13 19:36:10

how about I get a tax rate cut provided I have a healthy lifestyle and keep my organs in good nick so they can be used when I no longer need them.
(only joking)

Clouds and Fry, the 'is the person really dead' concerns seem very valid & relevant to me, there are also issues around the idea that doctors might let one person 'go' in order to use his organs to save the lives of others in need of transplantsshock

eccentrica Thu 11-Jul-13 19:36:36

bakingaddict
What about the people who have reduced mental capacity and may not be able to give consent one way or the other. Should a fundamental right like deciding what to do with your own body after your death just be ignored for people like this. How do you propose to get around this ethical question? If they never fully understand what they are consenting to does that mean the NHS takes their organs anyway simply by default of their reduced capacity.

There are several possible answers to this, and not one of them is a legitimate reason not to switch to an opt-out system.

Option 1. People who are defined somehow as having "reduced mental capacity" are put in the same category as children and assumed not to be capable of giving consent. Therefore they are "opted out" by default.

Option 2. They are treated the same as other adults and assumed to consent unless they say otherwise. To be honest, if you can't understand the question "what would you like to be done with your organs after your death?", you're not going to care one way or the other.

Option 3. Deciding what to do with your body after death is not a fundamental right. Dead people don't have rights. That's why it falls to relatives. In which case, the next of kin of the people with "reduced mental capacity" make the decision on their behalf. As they're the ones left alive, they're the only ones who are possibly going to care anyway.

Every single one of these is a better option than sticking with the current crap opt-in system simply because there are some cases which need to be treated differently.

(Incidentally I could do without the patronising claim that I have difficulty understanding your posts. It's really not that complicated.)

CloudsAndTrees Thu 11-Jul-13 19:48:55

Personally, I don't believe that doctors would let one person go in order to save another, that isn't really the issue for me. I just can't imagine being given the worst news possible and then having to wait for my loved ones to be properly dead before I could be with them/their bodies.

I would be able to believe that we were really dead as in there is no chance of recovery, but if that happens, I want to be allowed to be dead. I don't want there to be waiting around in between two types of death. I just can't get my head around that.

I would assume than anyone who believes opting out of the organ donation is selfish is also vehemently anti abortion. But that would be wrong.

ICBINEG Thu 11-Jul-13 19:50:26

I agree. Opt out with care taken over those not able to make an informed decision.

If you opt out you are also opting out of accepting organ donation.

eccentrica Thu 11-Jul-13 20:10:36

cloudsandtrees "I would assume than anyone who believes opting out of the organ donation is selfish is also vehemently anti abortion. But that would be wrong." ????

Why on earth would you assume that?

PatsyAndEddy Thu 11-Jul-13 20:10:53

I have a vision of Patsy in her grave, rotting gently through the years, clutching her festering organs and muttering 'Mine, my precious, all mine, no one shall have them. Miiiiine'

Gosh that's actually quite disturbing, was it really necessary?

CloudsAndTrees Thu 11-Jul-13 20:13:27

I don't, but it seems to me that if you think badly of one person that makes a decision based on what they feel they can cope with despite it leading to someone's death, then you would think badly of anyone else that does the same.

Itchywoolyjumper Thu 11-Jul-13 20:29:07

I've been on the donor list since I asked my mum to get me a card when I was 14. My husband joined the list when I asked him to and our DS has been on it since he was born.
I don't really care what happens to my bits when I die. The doctors can put them in a bag and swing them round their head if they like and it won't make a blind bit of difference to me because I won't be about to experience it.
However, having to face up to my son and husband's mortality wasn't any thing like as easy.
At the end of the day its the NOK who have to make this decision so prioritising those on the donor register over those not might increase the numbers on the list but there's no guarantee it'll increase the actual rate of donation.

mercury7 Thu 11-Jul-13 20:31:13

' would assume than anyone who believes opting out of the organ donation is selfish is also vehemently anti abortion.'
would you care to explain your logic here Cloud?

eccentrica Thu 11-Jul-13 20:32:10

clouds Since you've (a) equated the termination of a pregnancy with the death of an adult/child, and (b) have dragged abortion into a discussion to which it has no relevance, I assume that you hold extreme anti-abortion views?

CloudsAndTrees Thu 11-Jul-13 20:37:36

No, not really - to both the posts addressed to me.

I don't hold extreme anti abortion views, but I do resent being called selfish because I don't want to donate organs. I don't think it's fair or correct to call someone who has an abortion selfish, and I don't think it's fair or correct to call someone who wishes to retain their organs after their death selfish.

Both are decisions that people make according to what is best for them, even when it has an effect on someone else. That's where the comparison can be made. But I don't want to derail the thread with too much talk of abortion, that's not what this is about.

mercury7 Thu 11-Jul-13 20:42:50

Clouds, you cannot retain your organs after your death, it is a logical impossibility, when you are dead there is no you to retain anything, you are no more, you have ceased to be

mercury7 Thu 11-Jul-13 20:44:15

and the analogy with abortion is so weak that it's useless

CloudsAndTrees Thu 11-Jul-13 20:49:14

Of course you can retain your organs after death!

They either get buried/cremated/dropped in the sea with the rest of your remains or they don't. If they aren't deliberately taken out, then they are retained.

I don't think the abortion analogy is that weak. They are two very different things obviously, but they are both decisions that we have the right to make because they are both decisions that affect our own bodies. They are also both decisions that will make a difference to whether someone else lives or dies.

crashdoll Thu 11-Jul-13 20:51:09

Of course it's selfish if you'd be willing to accept an organ if you wouldn't give! Be resentful all you like and yeah, the truth isn't always pleasant.

mercury7 Thu 11-Jul-13 20:53:43

'I don't think the abortion analogy is that weak...They are two very different things obviously,'
duh...oxymoron
I give up you clearly have idiosyncratic idea's about logic and analogy!

CloudsAndTrees Thu 11-Jul-13 20:56:09

I used to think I'd automatically accept an organ if i needed one despite the fact that I feel uncomfortable about it. Threads like this have made me re think that. Unless my children or my husband were particularly dependent on me, I genuinely don't think I'd want an organ from someone who only wanted me to have it if I have the same thoughts about the subject as they do.

I'm sure that having an organ from a stranger inside your body is something that many transplant patients feel weird about, and I can only imagine that it would feel a hell of a lot worse if you had to wonder whether your donor would judge you as worthy or not.

I also think there's a lot of ways to be selfish and there's a lot of ways to be considerate and generous. It's a bit sad if a persons whole right to life is judged on one single thing.

PatsyAndEddy Thu 11-Jul-13 21:00:48

I'm still trying to think about another medical procedure that makes people feel they have the right to condem people for or another part of pur bodies people feel they have the right to dictate what should be done with it.

No one took me up on the hair/wig point.

Kiriwawa Thu 11-Jul-13 21:02:46

I just don't understand the idea that anyone would prefer their organs to rot rather than save someone's life. I can't get my head around it.

How completely brilliant to know that, although you're dying, someone else is going to live on because of you. I can't imagine any better thought to have in my last moments personally.

mercury7 Thu 11-Jul-13 21:04:54

I dont think there is an analogy unless it includes the fact that the person is dead and has no interest in what happens to the body parts.

QueenStromba Thu 11-Jul-13 21:23:57

My feeling on the matter, like many on this thread, is that the organ donor register should be opt out rather than opt in.

I also feel that who gets an organ should be on the basis of need. BUT if two people are basically tied for need of the same organ then if one of them is a registered organ donor then they should get it.

There are plenty of reasons why someone couldn't give blood. I've quite often not been able to produce enough blood for all of the blood tests a doctor has requested so a pint would be completely out of the question. But there's no reason why other people couldn't make use of my organs once I'm dead as long as they are in a decent state and I am on the organ register (I wouldn't be surprised if all they wanted was my corneas though).

ICBINEG Thu 11-Jul-13 21:24:35

yup analogy to abortion is shit.

abortion = denying someone's birth when you have a huge ongoing vested interest in the decision, and it will affect you profoundly

refusing to donate organs after death = denying someone already living the chance to continue life when you have no vested interest in the decision and it will affect you not one iota.

CloudsAndTrees Thu 11-Jul-13 21:35:59

But you make the decision when you are alive, so the knowledge or the fear of having your organs taken while your body is kept running can have an effect on some people.

It can have an effect on the family who are left too, depending on their feelings.

People are saying that the knowledge that you can save someone else's life in your dying moments would be a good thing, and many relatives of donors say they were comforted by the fact that a part of their loved one has helped someone else.Those are entirely reasonable feelings, but I don't see how you can believe those feelings to be valid if you can't alos see that there are times when the decision that's made will affect someone that's alive.

It's not true to say that you have no vested interest in the decision and that it won't affect you one iota just because the deed will actually be done after your brain is dead.

ICBINEG Thu 11-Jul-13 21:44:33

Has anyone actually said they are afraid of that? Or is this one of those what ifs that is baseless?

We make decisions every day that affect us in profound ways.

Some people smoke even though they know it is harming them.....

But at the end of the day your decisions have consequences.

I am pretty happy for the consequence of being ruled by a fear of having your organs removed after death is that you are unable to accept a donor organ yourself.

Similarly with religious issues. If you religion is more important than prolonging someone else's life then it is more important than prolonging your own.

If your family have an issue with it and you feel enough for them that you won't donate organs then you feel enough to not accept them.

I have no problem with people making decision and owning them and baring the consequences.

To think you have the right to accept a donated organ without being willing to donate is simply not reasonable.

lustybusty Thu 11-Jul-13 21:44:52

Sorry, patsy I must've missed your hair/wig post. Was it about growing hair long and cutting it off and donating it to a charity that makes wigs by any chance? If so, yep, tried it, they didn't want it. Too many products (dye, perm) for them to accept it. BUT as I said upthread, I am a selfish living human, I won't grow my hair to bum length, keeping it virgin, just to benefit a cancer patient. I won't eat a vegetarian diet, be teetotal or not smoke, just to preserve my organs, but if I am able to do something without massively inconveniencing myself, I will do it. Although, I do volunteer, and am on the bone marrow register and tomorrow I'll be seeing a out getting on the living organs register, so I guess I'm not entirely selfish... Hmm.

The scenario of "is this person really dead" that I posted about earlier was definitely a real fear when I was a youngster, and I do know other people for whom it was a concern.

I'm more informed now, yes, but there are plenty of people still with that little niggle in the back of their minds. And I don't think these people should be called selfish. People have fears and they are not always rational fears, but are still real to the person with that fear.

oxcat1 Fri 12-Jul-13 11:36:13

Not really that relevant to the discussion, but actually many people who are ill enough to need transplants themselves often can donate organs, including those with CF. It used to be quite common to transplant heart and lungs into CF patients, taking the CF patient's heart and donating that to a heart failure patients.

If you agree with donation on principle, but don't think you'd be eligible, why not join the register anyway and let the doctors make that decision, should it ever come to it?

There is a really good list of questions and answers here, but the questions relating specifically to pre-existing conditions/medical eligibility are here:

30. Can I be a donor if I have an existing medical condition?

Yes, in most circumstances. Having a medical condition does not necessarily prevent a person from becoming an organ or tissue donor. The decision about whether some or all organs or tissue are suitable for transplant is made by a healthcare professional, taking into account your medical history.

There are only two conditions where organ donation is ruled out completely. A person cannot become an organ or tissue donor if they have been diagnosed with HIV or have, or are suspected of having, CJD.

31. Can I be a donor if I have been turned down to donate blood?

Yes. The decision about whether some or all organs or tissue are suitable for transplant is always made by a specialist, taking into account your medical history. There may be specific reasons why it has not been possible to donate blood, such as having had a blood transfusion or having had hepatitis in the past. Or there may be reasons why you could not give blood because of your health at the time - sometimes a simple thing like a cold or medication that you are taking can prevent you from donating blood.

32. Who can join the NHS Organ Donor Register?

Everyone irrespective of age or health and who is considered legally competent can join the NHS Organ Donor Register. Joining the Register expresses a wish to help others by donating organs for use in transplantation after death but importantly, joining the Register also is a way to give legal consent or authorisation for donation to take place.

Your entry in the Register provides legal consent for the donation of your organs. Children can register but their parents, guardians or those with parental responsibility will be asked to provide their consent should the child's death lead to donation being considered.

bakingaddict Fri 12-Jul-13 12:06:13

Eccentrica I like the way you seem to treat people with reduced mental capacity as property of the state.

Your statement 'if you cant understand the question ''what would you like done to your organs after your death?'' your're not going to care one way or the other beggars belief. So you don't believe in human rights of the individual but seem to put the pursuit of a potential donor organ above all else. Your stance is as inherently selfish as the very people you are rallying against as you give no concession to protecting the vunreable in society.

I often wonder how many NOK cannot bring themselves to sign consent for organ removal when a loved one is in this situation and therefore lots of potential organs are wasted due to this. As I said before I would like to see making it legally binding that your organs can be removed without consent from NOK if you carry a donor card before moving towards an opt-out system. It just seems safer to me and gives more protection to vunreable members of society.

eccentrica Fri 12-Jul-13 12:34:15

bakingaddict Did you write that response before I'd actually posted mine?

Your reply is unbelievably disingenous.

I have no idea what you're talking about when you say "I like the way you seem to treat people with reduced mental capacity as property of the state." What a crock.

I didn't express a preference for any one of them, I said they were three ways of responding to your question as to what should happen to people without the capacity to consent, each of which is better than the current opt-in system.

None of these is "my stance" as far as you know, as I didn't say which one I would prefer, and I certainly said nothing to justify your statement "So you don't believe in human rights of the individual but seem to put the pursuit of a potential donor organ above all else." my god, I've rarely encountered such dishonesty even in online arguments. Shameful.

If you just said that there was a blanket ban on anyone with "reduced mental capacity" (however the hell you propose to measure that) donating organs, and just had an opt-out system for everyone else, that would still obviously be hugely better than the current system.

I am writing this reply for the benefit of anyone else who might be following the thread as I have no expectation that you will actually respond to what I've written, rather than a straw man of your own invention.

MerylStrop Fri 12-Jul-13 12:37:22

I'll donate anything anyone wants

But no, I don't care if the recipient is prepared to be a donor themselves

I'd want it to go to the person who needed it most

(Surely though, those most likely to need donated organs are those most unlikely to be able to be donors?)

oxcat1 Fri 12-Jul-13 14:00:50

Meryl: please see my message two below, and in any case, there is absolutely no reason why someone with, for example, a lung disease that could eventually lead to a transplant getting hit by a car six years earlier!

As I wrote earlier up the thread, I am in the process of getting listed for a transplant. I am also on the donor register, as are most others I know who are awaiting transplants. You can't fail to realise how desperate the shortage situation is when you sit in a waiting room full of patients waiting for transplants and realise that half will die before even getting that transplant.

Mia4 Fri 12-Jul-13 15:58:20

I'm a donor, i don't care who gets my organs as long as they help. I do think all ID cards or licenses should include whether a donor or not on them as part of the registry process.

I know quite a few people I've had to tell to formally sign up and make their wishes clear, all of which who've said they wished they'd just been given the option when receiving passport, licence etc instead because it hasn't crossed their mind beforehand.

attofa Fri 12-Jul-13 16:36:00

I will be totally transparent. I work for NHS Blood and Transplant and it's great that people are debating organ donation. 3 people die every day in the UK in need of an organ transplant.
There are a few areas that have been misreported in the Daily Mail. The new strategy does not propose moving to a system of reciprocity, where those on the Organ Donor Register receive higher priority if they need to be placed on the transplant waiting list. The strategy does however call for national debates to test public attitudes to a range of more radical actions which could increase the number of organ donors.

One of our professors has sent a letter the Daily Mail clarifying and correcting some of the points raised both in the news article and in the comment piece. In the meantime, please read:
www.organdonation.nhs.uk/newsroom/statements_and_stances/statements/odt_strategy.asp

Transplants aren't nearly that simple. It isn't a matter of needing an organ and being chosen for your morals. You can only be chosen for your biological suitability, and given the shortage of organs, it will go to the person who is most likely to have success with it, regardless of their morals.

How can it be any other way?

Thanks for that attofa. Very interesting reading.

ZingWidge Fri 12-Jul-13 16:45:43

Re-use and recycle me.

My brain is already useless, but whatever would be useful for others I'd be happy to help.

I only insist that they check first that I'm properly dead...

eccentrica Fri 12-Jul-13 17:13:26

Thanks for that link attofa. Very interesting and reminded me to go to the website and update my details as I've moved house! I ended up reading the FAQs which are especially interesting after the discussion here.

RedToothBrush Fri 12-Jul-13 20:33:09

Emotional blackmail and 'incentives' to illicit the 'correct' behaviour which involve placement value and judgement on other peoples beliefs have no place in the NHS.

Thats got nothing to do with whether this is for organ donation or any other form of healthcare.

Its simply unethical because it removes free choice and is coercive. Consent should always be completely free from pressure, whether you agree with the patient or not.

Alisvolatpropiis Fri 12-Jul-13 20:41:02

This sounds great in theory. But so does communism.

In practice,I don't feel comfortable about it.

Nor do I feel comfortable that in a couple of years the Welsh will be harvested for their organs whilst the rest of the UK gladly takes them without taking the steps towards presumed consent themselves.

Organ donation - I'm 100% for it. I carry a card. I still don't like the idea of presumed consent. Not least because a lot of people will now "opt out" because their right to choose has been removed.

RedToothBrush Fri 12-Jul-13 20:56:06

The comparison with communism is very true.

Its too open to abuse and for the system to be manipulated; and not to the benefit of potential donors or their relatives. Opting out relies on knowledge and having the ability to do this. It puts certain groups at more risk than others; vulnerable groups.

I think it will erode trust in doctors.

I think that you need to persuade people of the merits of organ donation. As difficult and frustrating as that may be. I don't think its an issue that should be forced in this way.

Wbdn28 Fri 12-Jul-13 21:13:50

YABU to propose a priority system. NHS treatments should always be given in strict order of clinical need, not in order of who "deserves" it as a nice/helpful/good person.

peggyundercrackers Fri 12-Jul-13 21:20:27

this suggestion is all wrong. im confused as to why we(all of society) seem to be hell bent on keeping people alive. why? its natural to die - there is too much medelling already. And before anyone has a go at me because i dont agree with it - i have refused blood before and would definitely refuse an organ - taking other peoples body parts is wrong - doesnt matter they are dead.

Alisvolatpropiis Fri 12-Jul-13 21:30:45

I am probably totally off the mark peggy but are you a Jehovah Witness?

It is natural to die yes. No arguments there, death and taxes are the only certainty in life as the saying goes. As you have said you have stood by your beliefs re blood donation previously. Could you stand by and do the same for your child? That isn't a goading question, I am curious because often children will change the most strongly held beliefs. As far as I know doctors can override parental decisions such as these in practice and have done.

CloudsAndTrees Fri 12-Jul-13 21:31:33

There is so much else they could do to improve transplant rates before completely overhauling the system we have.

We could stay with opt in, and have a massive public information campaign to change opinions and motivate people to join the register. It could be like the no smoking/drink driving/breastfeeding campaigns. We could remove the right of a relative to overrule the potential donors wishes so that no organs go to waste from someone that was registered to donate. We could encourage people to think about it by asking them at GP appointments and clinics, on forms for passports, driving licences, European health cards, bank accounts, benefits.

It would be wrong to move to an opt out system without trying these things first. Especially when the only right way handle the transition to an opt out system would include doing the above so that it is made easy for people to opt out if they want to.

RedToothBrush Fri 12-Jul-13 21:42:04

Clouds I agree.

I don't think we are asking enough questions about the practicalities of a opt out scheme in reality. Yes the idea is appealing, if it was in an ideal world.

But we don't live in an ideal world. We live in an era of medicine where budgets rule, targets are king and the best interests patients aren't necessarily top of the list where they should be.

We have elderly who are victims of institutional abuse, we have massive scandals over coverups in several areas of the country which lead to unacceptable levels of deaths, we have widespread reporting of issues over neglect of patients.

And we are not questioning the implications of this system in this context?

We should be.

Alisvolatpropiis Fri 12-Jul-13 21:55:11

Clouds I completely agree.

I must admit I always felt a bit weird about donating my eyes until my Nanna had two cornea transplants,years ago now. Having seen the difference it makes to her life I am ready and willing to donate all I have that can be used when I die.

Making it "you're either in or you're out" will not solve the problem re not enough people donating. We will see in a couple of years time if it actually has a detrimental effect. I am Welsh and live in Wales. I have lost count of how many people who have said they will now opt out because their option to choose what organs they gift to somebody after their death has been removed.

Organ is and should be an act of willing, well charity if you will. Removing people's right to choose at all could well have a massively detrimental effect on organ donations as a whole.

LustyBusty Sat 13-Jul-13 00:06:18

clouds I think you have picked on one of my biggest bugbears there- why should my wish to donate my organs be overridden by my hopefully grief stricken next of kin, just because they're squeamish/don't agree/whatever. It's MY body, and MY choice. As an adult, in full control of my faculties, I think this is the only time a non qualified person is allowed to overrule my decision, and I think this needs to be addressed first...

I am surprised that so many on this thread are so la-di-da about death, as if personal ideas and beliefs about death are not to be taken seriously, all this "you're not you any more" etc.

Even without a particular religious teaching which forbids organ transplants, surely many people have very complex feelings about dying, and those probably play a big part in the decision not to become an organ donor?

mercury7 Sat 13-Jul-13 12:28:39

'surely many people have very complex feelings about dying, and those probably play a big part in the decision not to become an organ donor?'

yes of course, but I think it then follows that they should also not be an organ recipient.
To say that you don't agree with organ donation and then accept a donor organ is blatant hypocrisy...a clear case of having your cake & eating it

CloudsAndTrees Sat 13-Jul-13 13:36:21

A clear case of having your cake and eating it? Really?

You mean when you are facing death and contemplating leaving your children bereaved you are 'having your cake and eating it' if after waiting for months you are lucky enough to get an organ having previously been uncomfortable about the idea?

hmm

RedToothBrush Sat 13-Jul-13 14:24:55

A clear case of having your cake and eating it?

Maybe it is. But we are talking about human and human nature which has a tendency to be hypocritical.

It doesn't make people 'bad' though. Just they have conflicting views.

It is perfectly possible that you could believe that you think your body shouldn't have organs removed, but you could believe that if others are willing to do it, that it would be unacceptable to let them go to waste and refuse them.

That might offend some, but then beliefs are generally complex anyway.

mercury7 Sat 13-Jul-13 17:40:24

'It is perfectly possible that you could believe that you think your body shouldn't have organs removed, but you could believe that if others are willing to do it, that it would be unacceptable to let them go to waste and refuse them.'
Red of course you can believe that, but it's irrational given that you're happy to let your own organs go to waste.
Obviously anyone can believe anything but it makes sense to give less weight to those which are not based on clear reasoning.

Clouds how can a sane and moral person let their own discomfort at having organs removed after death stop them from helping others who are facing death and contemplating leaving their children bereaved?

SoupDragon Sat 13-Jul-13 17:52:53

It is perfectly possible that you could believe that you think your body shouldn't have organs removed, but you could believe that if others are willing to do it, that it would be unacceptable to let them go to waste and refuse them.

That doesn't make sense though as you would refuse at the point of being put on the transplant list when there is no actual organ to waste. Refusing simply gives someone else the chance at life. Also, don't they have more than one recipient lined up foe an organ?

merrymouse Sun 14-Jul-13 08:43:32

I don't think its a very practical idea.

I'm not convinced that there is an accurate register of potential donors - my impression is that the best way to ensure donation is to talk to your family about it, and that in the end your family's wishes have more influence than your own.

Also, it seems to go against general medical ethics that require a doctor to treat on basis of need, not moral judgement.

On the other hand, if somebody were squeamish about donating organs, presumably they are also squeamish about receiving them...?

AnneTwacky Sun 14-Jul-13 10:31:08

I'm a registered donor and I would prefer my organs went to whoever needed them with no conditions attached.

I find this proposal very sinister. sad

CloudsandTrees If I remember correctly, when you apply online for a tax disc, there is the option to register for organ donation. Not sure about other online facilities though.

I think there are lots of things that can be done to encourage people to register as organ donors - I'm even quite happy with an opt out policy, though I think close relatives should also have a say after the death (so policy did not cause distress to any families)
However I don't think this is a good way to "encourage" donors, because it puts too much pressure on people waiting for a transplant. Let's just treat everyone equally, and yes talk to them about whether when their turn comes they'd be happy to be a donor to others - I'm sure many would if asked. But I don't think it should have an effect on their wait for a donor organ, that seems very simplistic and unfair to me.
Let's just raise awareness and ask more people if they'd consider carrying the card.
DD just signed up for the card, so that's making me think - it arrived last week. There's probably a lot of people like me who'd be happy to donate organs after death but just haven't quite got round to commiting themselves/ signing up for the card.
I think an opt out system with some safeguards for any strong family feelings would be a good way to go with this.
I do also think that with many people waiting for donors more should be done to raise awareness and encourage the slightly reluctant/ reassure people/ encourage commitment to this.

Charingcrossbun Sun 14-Jul-13 14:29:29

I agree with the majority on supporting a opt out system. I think it's also important that the decision is not placed on grieving relatives. I have experienced this; there is nothing worse when having just received devastating news of a death to then start arguing about what the deceased would wish. At this early stage having to start thinking of some posthumously is really really tough. Opt out would really help and not leave one family member with the burden of having been the one to say yes.

That's the kind of reason why raising awareness and having everyone talking about it more would surely help Charing

Am glad that DD has signed up for the card and decided she'd like to donate her organs after her death. Of course I hope it's not something I ever have to think about for her, but am glad I've raised a DD with such a generous and thoughtful heart.

I'm sure having these conversations with our loved ones can only be a good thing.

RunnerHasbeen Sun 14-Jul-13 14:42:23

How would you judge, someone who is diagnosed with a serious condition who then rushes out to get a card to bump themselves up the list or because it is the first time they have been forced to think about it, who decides if they count? What if a potential recipient runs a fundraising or awareness drive and signs up a hundred additional people - would that also increase their chances?

This is a horrible idea, putting pressure on the most vulnerable. It is usually the families who refuse, people being asked to grieve before their loved one is completely dead in their eyes, often the first time they realise there is no hope. I hope my family would donate any part of me but could also be sympathetic to how difficult it would be. I think, irrationally, I would find or harder to donate the organs of my DC than my DH, I hope I could, but it would be harder.

I would like to see a breakdown of the refusers, is it parents or spouses, what their reasons are and if they felt differently down the line. Ask them, in a non judgemental way, what might have made the decision to donate easier and take it from there.

LustyBusty Sun 14-Jul-13 15:27:17

juggling ref your post at 14:19, I'm not sure I've read it properly, do you mean consult close family if a person has not opted out (should this come into play) or if a person has opted in (current system). Sorry, it's Sunday, it's hot and my brain isn't working!!

Well when I was talking about having an opt out system I meant that you'd be "in" ie considered as a donor unless you'd specifically opted out of this (As has recently been put in place/suggested in Wales I think)

But personally I'd prefer them to also consider the feelings of close relatives. For example if a child dies I think the parents (and possibly siblings) wishes should be considered too. I think in Wales some doctors have said that in practice they wouldn't want to go against wishes of close relatives ? But I'm not exactly sure what the new position is. (I have a feeling the suggestion was of no over-ruling my relatives, so if anyone hadn't opted out of donation they'd be considered "in")

Hope that clarifies my earlier post a little Lusty

PickleFish Sun 14-Jul-13 19:20:14

I also think it's a bad idea; a gift should be altruistic, without conditions attached - who are we to judge who is worthy?

Also very impractical, and would lead to the issues others have mentioned, about other ways to move up the list, determine worthiness, etc.

I don't mind the idea of opt-out, as then it might make people's wishes clearer. I am not sure about refusing to let families object, though.

I am both willing to donate and receive organs. However I also understand the inconsistency of some people saying that they feel uncomfortable about donating, but would still receive. It doesn't seem that illogical to me - if they have their own doubts about donating, then that should be respected, but presumably the person who has already donated didn't have those same doubts, or they wouldn't have done it.

I know there are some people that say you shouldn't eat meat unless you are willing to kill it yourself. I do eat meat, and yet I don't think I'd want to kill an animal myself, and I think there are other people who think the same - whether it's morals, squeamishness, or whatever variety of other reasons. Yes, perhaps somewhat hypocritical, but not uncommon, I think. However I do still eat meat, and I presume the person who is doing the killing has decided it is something that they are able to do. Clearly this is nothing like the issue of donating or receiving organs, but it does show that there are some issues where people can hold somewhat inconsistent, hypocritical, or selfish view, and not be regarded with total lack of understanding because a lot of people share that view. It's not saying it's right, but it is common - and I think that most of us have some sort of moral inconsistencies within ourselves, things that we perhaps just choose not to think too deeply about. Becoming aware, non-judgementally, of these contradictions in ourselves (and knowing that we all will have them) is one of the best ways to start considering other options and ultimately perhaps changing our minds.

JustinBsMum Sun 14-Jul-13 19:28:16

This subject totally irritates me, we should all make a visit to a kidney dialysis unit and chat to the patients and see how dire their lives are as they wait for a probably never arriving new kidney. For many it is a very slow death.

Why all the pussyfooting - it is beyond me - just make everyone a donor and those wishing not to be can fill in several forms/ have a small tattoo/ wear a bracelet saying they are out.

End of.

I do agree JustinB that all that's needed is a bit of proactive awareness raising. It should be cool to be "in" - and agree a move to opt out only is a great idea.

As a tangent (and after watching some interesting programmes on workhouses recently) I wonder if some of the culture slightly against donating organs might come from the time (not so long ago really) when poor people dying in the workhouse had their bodies given to medical science without any permission sought from family.

Also the traditional funeral service places a big emphasis on the body and coffin - personally I prefer a thanksgiving style remembrance, celebrating the person's life. And of course the body is still given back to the family and undertakers for burial after organs have been donated to others.
So, shouldn't be an issue really.

JustinBsMum Sun 14-Jul-13 21:06:42

I feel that it's the powers that be pussyfooting, as they do about just about everything in the uk. Whenever anything is in dire need of fixing the gov demands a report into it (which takes months/years and often then doesn't result in improvements).

I mean what is the down side of saying we are all opted in? (but can opt out if wished)

The "down side" is that the state automatically gets to decide what happens to your body and for many people that is not right.

SoupDragon Mon 15-Jul-13 09:19:17

The "down side" is that the state automatically gets to decide what happens to your body and for many people that is not right.

So they can opt out. They are a minority IMO, so the best system is one which suits the majority. A referendum would be interesting.

SoupDragon Mon 15-Jul-13 09:20:39

It's not true that the state automatically gets to decide - you get to decide when you choose whether to stay opted in or opt out.

LimburgseVlaai Mon 15-Jul-13 12:58:05

What a ridiculous idea!! Sorry I will NOT click on a DM link, and I haven't read the whole thread but...

What about blood donations? Should only regular blood donors be able to receive blood?

No, didn't think so. Same thing: you give a part of your body to someone who needs it more (and who needs it most) for altruistic reasons. No value judgement should ever be made.

Otherwise I could say: I don't want my blood to go to DM readers.

Dickwhittington Mon 15-Jul-13 13:06:20

So how long do you have to be on the list for before you can be eligible? Is it OK to go on the list after you get ill and are non longer suitable? can you only receive organs you offer to give?

Fillyjonk75 Mon 15-Jul-13 13:49:27

I'm on the donor register but I certainly don't intend to become a donor of any organs at any time! I also hope I will never require anyone else's organs either. It isn't exactly like donating blood is it?

The way I see it is that no matter how many people register as donors, there will ALWAYS be a shortage of human organs for donation, and so there should be, as medical knowledge advances doctors get better at saving people who have suffered terrible injuries in road accidents, and road safety improves so there are fewer accidents.

But hopefully there will also be significant improvements in artifical organs so that donation from human to human is simply never required and no-one has to die to save someone else.

I am very nervous about any system which makes it obligatory for organs to be removed on death - I think this would lead to doctors being too ready to see a person as ready to be scrapped for parts - or anything which goes against the principle of organ donation being just that, a gift freely given with clear consent.

Sorry, what I meant was that the default should never be that someone else has rights over my body which I then have to explicitly opt out of.

How is this different (in principle) to eg insisting that everyone has to give blood? Or be vaccinated, for that matter? (Medical exemptions aside, obviously). Neither of those things actually has any negative affect on you, does it? They are both v. good for society, help lots of people etc etc. So why not make them mandatory?

keskiviikko Mon 15-Jul-13 14:09:11

I am one of those people who isn't on the register, and never will be. But saying that I would never accept an organ either. I used to donate blood until I got too ill, and will not accept blood either as they will not let you donate blood after having a blood transfusion, so that made me think that they don't trust the blood they are taking. I don't think it should be mandatory, and while an opt out option is an idea are they really going to check the database when they are getting ready to switch the machine off and harvest your organs. Organ harvesting is time critical.

It's different mainly because you can opt out if you want to.

And also because you'll be dead, so even if anything was done against your wishes (because you hadn't got round to expressing them) you wouldn't actually know about it.

All very different to being made to give blood or forced to take part in a vax programme.

I think they'll check the database first, yes, keski - I don't think it will take long at all to do that.

SoupDragon Mon 15-Jul-13 14:25:03

How is this different (in principle) to eg insisting that everyone has to give blood? Or be vaccinated, for that matter? (Medical exemptions aside, obviously).

Well, the person is dead for a start and has no use for their organs.

Again this idea that because you are dead it doesn't matter what happens to your body!

merrymouse Mon 15-Jul-13 15:52:56

The thing is, we are all basically donating our bodies to the worms after death.

It's just that some of us would rather that the prime bits helped enrich the lives of living people for a bit. You can't escape the circle of life.

SoupDragon Mon 15-Jul-13 16:25:04

Again this idea that because you are dead it doesn't matter what happens to your body!

Well, it doesn't. On account of you no longer being in it. Religious beliefs aside (which is what opting out is for).

Forcing medical treatment on a living person as you describe would probably be assault.

CloudsAndTrees Mon 15-Jul-13 16:51:27

It might not matter to some people, but actually it does matter to me what happens to my body while there is still blood pumping round it, and it matters to me what happens to my loved ones bodies while they still have blood pumping round them.

It is ridiculous to say that it doesn't matter what happens to a persons body after it has died, even more so when the actual body is being kept alive artificially.

If it didn't matter, then funeral parlours wouldn't bother about treating bodies with respect, people wouldn't bother thinking about what they want their loved ones to wear while they are buried or cremated. In fact, people wouldn't bother even deciding if they want to be buried or cremated.

But they do, so it does matter!

SoupDragon Mon 15-Jul-13 17:09:45

So
Opt
Out

CloudsAndTrees Mon 15-Jul-13 17:11:27

I will if I have to, but that's not the point I was responding to.

I was responding to people who are saying it doesn't matter what happens when you are dead, or in reality, half dead.

Yes, in the abstract I can say I'd donate parts of DH or DC because they're currently fit and well and it is an abstract question.

But I know that when I have been faced with a coffin with an actual family member's body in it, my reaction has been unscientific and visceral.

I wouldn't expect a funeral director to have a conversation about his new girlfriend over someone's body, even though objectively it makes no difference.

Fillyjonk75 Mon 15-Jul-13 17:17:36

I'd opt out if it was an opt out system. While it's an opt in system, I'm in.

merrymouse Mon 15-Jul-13 17:25:28

I'm not really convinced that the process of embalming is more respectful than the process of removing organs for donation. (And I would imagine that donating organs wouldn't preclude being embalmed afterwards).

Isn't that a bit contrary of you Fillyjonk ?

Not everyone is as proactive, organised, and decisive as you and those organs are badly needed.

My DNeice for example is (at five) already one kidney down due to Wilms Disease (a cancer of the kidney affecting children particularly I understand)
Depending how well the other one copes with the job of two kidneys she might need another one one-day ? Hopefully not as I know there's a long waiting list.

But good for you for being "in" ATM, and of course it's your choice. And it's not really personal. Just think you're in the minority that's all.

RedToothBrush Mon 15-Jul-13 18:51:47

I love how everyone on this thread, assumes that everyone has the ability to opt out.

How about people who have language issues, limited capacity or inability to opt out (such as having literacy problems).

This is what bugs me. Just because YOU could opt out, doesn't mean everyone can. And we should be thinking about this as its the most vulnerable who are most at risk.

CloudsAndTrees Mon 15-Jul-13 18:56:14

Not everyone is proactive, organised and decisive enough to opt out either Juggling, does that mean they don't have the right to decide what happens to their own body after their brain has died?

Well, personally I think families feelings and opinions should be considered too. Possibly they may be likely to know what the deceased person's own views might have been as well Clouds
Continuing to ask family may go some way to covering the issues you raise RedToothBrush
But does seem to me that we have the balance wrong at present.

SoupDragon Wed 17-Jul-13 07:35:16

Not everyone is proactive, organised and decisive enough to opt out either Juggling, does that mean they don't have the right to decide what happens to their own body after their brain has died?

Except they do have the right to decide. They made their decision when they chose not to opt out. Anyone who feels strongly about not donating will opt out.

SoupDragon Wed 17-Jul-13 07:39:31

Language issues aren't an issue at all. Every single document comes in what seems to be 20 different languages.
Anyone with limited capability for understanding should be automatically opted out.
Literacy issues, I imagine would be dealt with however you usually deal with things you can't read. It's a simple yes/no thing.

The point is that other countries have opt out systems. Have they not considered these issues already? Does the system work well there? Are the British inherently more stupid and unable to cope with making a choice to opt out?

SoupDragon Wed 17-Jul-13 07:43:17

On one of these threads something was mentioned about how funeral parlours etc "respect the dead". That is purely for the benefit of the living. Any choice of cremation/burial/put on the compost heap is purely honouring the memory of the deceased. The dead don't care.

As an aside, can relatives give permission for organs to be donated even where there is no donor card/registration?

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