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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask you not to leave it until it's too late.....

185 replies

KnappShappey · 20/07/2015 14:43

to discuss organ donation with your family and next of kin.

New statistics released today show that organ donation has dropped by 5% for the first time in 10 years.....

Only 58% of families allowed organ donation to go ahead despite the wishes of their loved ones.

Don't leave it to your family to struggle with the decision once you have gone, discuss it today........

You can register online and share your decision on Facebook to raise awareness amongst friends.

OP posts:
LibrariesGaveUsPower · 20/07/2015 15:21

I doubt that there is political appetite for it. But what I would like to see is:

-binding opt in. So your wishes cannot be overruled by a next of kin;

  • binding refusal to donate. So your wishes cannot be overruled by next of kin; and
  • anyone who hasn't expressed their view it is decision for the next of kin as now.

I really do not see that it is a decision for anyone else unless the person has not considered it during their lifetime.

Original poster
KnappShappey · 20/07/2015 15:22

Exactly Totality22 opt out is a big issue but overriding seems achievable and would be a big boost if the statistics are to be believed....

OP posts:
Tanfastic · 20/07/2015 15:22

I'm all for an opt out register. My dad died waiting for a transplant.

However no matter what I say I can't convince dh to sign up, god forbid anything should happen to ds but we would be completely at odds about any decision to donate his organs. Hopefully I'm never put in that position Confused.

Original poster
KnappShappey · 20/07/2015 15:24

YES Libraries just YES!!!

Run for parliament - I will vote for you Grin

OP posts:
Dr0pThePirate · 20/07/2015 15:27

I think the problem is that people are squeamish about it. Organs are harvested in the event of a healthy donors death, not at the end of a long and blessed life.

People are obviously unhappy about thinking of their loved ones untimely demise. They SHOULD think about, but they don't.

I am on the donors register BTW.

tilliebob · 20/07/2015 15:29

Both DH and I are registered and are aware of each other's views as are my eldest dcs. I'm not sure about an opt out system though, I feel it's too big brother for me, but I do think that families should not be able to over ride a persons wishes.

It also irritates me that in some survey I read, lots more would happily receive an organ but wouldn't donate ConfusedConfusedConfused

ZadokTheBeast · 20/07/2015 15:30

For those who are asking why the family can overrule the deceased's wishes . . . try to imagine the scenario for the staff where they have to proceed against the wishes of the next of kin. Example, if my DH (God forbid) had. expressed a wish to donate, and in the event I overruled that, how would hospital staff say to me 'well, we don't care what you want, we're now going to harvest your DH's organs'? It's also really important in this scenario to bear in mind that the majority of organs have to come from a heart-beating donor (except kidneys in some cases). What this means is that the donor is brain dead, but being physically kept 'alive', i.e. heart beating. They have to continue to be kept 'alive' while the harvesting is done. So the relative does not have the same experience at all of saying 'goodbye'. For those who are able to face it and accept what has to happen, well words aren't enough really to describe their bravery. But some people faced with the reality just can't do it. And it's not for hospital staff to forcibly wheel their hearbeating relative off to theatre against their wishes, they (the staff) just can't be put in that position.

DadfromUncle · 20/07/2015 15:31

Have always carried a donor card (since 16 and got a moped) - long time ago now :)

I am on the register and my Ma and Sis know the score.

I believe in helping someone out if I check out early.

If they make it an opt-out, however, I will opt-out as I don't think it's up to the State to say who my organs belong to.

LibrariesGaveUsPower · 20/07/2015 15:33

I understand the difficulties for medical staff. But it would be a case of "Your husband has signed up to a binding commitment that he wants to do this and we are honouring that wish". I really don't see that the wishes of the relatives should ever override those of the donor.

Lurkedforever1 · 20/07/2015 15:36

I get the opinion that opt out is very big brother, but we do already have that basic idea in place with other ideas, eg school weigh ins. Although I agree it muddies the water.
I don't think anyone does like to think of their loved ones being cut up after death, but personally I think losing them due to needing an organ that in theory was 'available' is a hell of a lot harder.

ZadokTheBeast · 20/07/2015 15:38

Libraries yes, and that's what staff and transplant coordinators in particular try to tell the relative in order to persuade them to give consent. However in cases where the relative says absolutely not, no way, how would staff deal with a distraught relative e.g. refusing to leave the bedside? Physically remove them? I can't see a legally workable solution which would remove the next of kin's power of veto, which means that it is all the more important to discuss this issue with the people who would have the decision if it happened to you - explain to them yourself that you really want your wishes respected.

FelixFelix · 20/07/2015 15:41

I didn't know family could overrule your decision once you're gone?! Shock What's the point in even having the register in the first place then? Such a bizarre system.

I am registered and carry the card. I'll make sure everyone knows what I want to do.

Viviennemary · 20/07/2015 15:42

I don't like the idea of organ donation but would respect the wishes of my family if that's what they wanted. And I don't agree with opt out either. It should be left the way it is now.

vvviola · 20/07/2015 15:44

Yes, what Zadok said.

I was very lucky to study under a leading academic who specialises in the ethics of organ donation, and he said that most transplant medics would be very against opt-out or overruling.

Partly because they can foresee the media firestorm of "Doctors killed my Mum and stole her organs" if they were to go against the next of kin's wishes.

The way to do it is to promote opting-in and also to encourage people to have to discussions.

Also (and I wish I had my notes here for the exact figures) unfortunately most people aren't suitable to be donors, and even increasing the percentage of people signed up may not necessarily increase the number of available organs.

Original poster
KnappShappey · 20/07/2015 15:45

ZadokTheBeast I see what you are saying but how do we get people talking about it so that people are aware of their families wishes before they are put in that situation.
I wonder how many of the 42% that override wishes had ever discussed it with the deceased?

OP posts:
ZadokTheBeast · 20/07/2015 15:45

Felix the register gives a clear indication of the deceased's wishes which can inform the next of kin's decision on consent. It also serves to inform medical staff in the absence of n.o.k. Finally, to be blunt, it was brought in with the supplementary aim of raising awareness and promoting discussion.

Sallystyle · 20/07/2015 15:51

I can totally understand why relatives would refuse to let their loved ones be organ donors. I am on the organ donor registration and everyone knows my wishes but I can't bring myself to judge those who go against their loved ones wishes. It is not the moral choice to make and it is very selfish but I understand what a hard decision it must be to make when feelings are running very high.

I do agree that legally you should not be able to override someone's wishes when they are on the register, no matter how you may personally feel about it.

LibrariesGaveUsPower · 20/07/2015 15:52

Honestly Zadok? Yes, if DH went against my clear wishes I would want him removed. It is my body and should be my choice.

ZadokTheBeast · 20/07/2015 15:52

Knapp That's exactly the issue - the biggest obstacle (apart from donor organ availability, there are fairly narrow circumstances in which one would be considered a potential donor) is the high relative refusal rate. The various campaigns and awareness raising initiatives should focus, I think, on the importance of your relatives knowing and understanding/accepting what you want. Families need to discuss this. And I think there should be more honesty about what's involved in the process, too, so that it doesn't come as a shock to already distressed people when they are asked. It's not nice. You don't get to hold their hand as they drift away peacefully, and I would guess that the vast majority of people don't understand that.

LibrariesGaveUsPower · 20/07/2015 15:54

There was a thread just this week about a husband who said he would refuse permission against the wife's wishes if the time ever came. That is so so wrong.

Dr0pThePirate · 20/07/2015 15:58

I think we need to talk much more about organ donation. People are still afraid of it.

I also think we need to stop calling people who aren't on the register "selfish" It really won't help the cause if those advocating donation come across as sanctimonious. I think shuts down discussion and puts people off finding out more. We need to persuade as many people as possible to sign up and talk to their families about their decision.

Also (and I wish I had my notes here for the exact figures) unfortunately most people aren't suitable to be donors, and even increasing the percentage of people signed up may not necessarily increase the number of available organs

That is also a sad fact that we might need to come to terms with.

Original poster
KnappShappey · 20/07/2015 16:02

Zadok maybe I'm just too biased to see it but I feel that of all the issues that get discussed in the media organ donation is never properly debated. We need to be discussing this....

On a side note, more and more organs that would previously not have been suitable are being used as 'marginal' organs. People who would have been considered too old or too sick are offered them as a shorter term solution but still a life line. I think it's fantastic that more options are opening up all of the time but as you say we need more discussion and honestly to stop the hysterical horror film scenarios people imagine and to focus on the positives. Death is not a positive thing but the gift of life can be......

OP posts:
minionwithdms · 20/07/2015 16:06

I live in Wales, where there will be an 'soft' opt-out system from December. I think it's a good idea, but would also like to see the 'opt in' and 'opt out' options become binding. It would really upset me to think that my family had gone against my wishes about my own body.

Boosiehs · 20/07/2015 16:08

I totally agree with the opt-out system that Wales is bringing in. If you disagree you have to opt-out, and family members cannot override

The miniscule number of transplants each year, and the fact that people are dying on the transplant list goes to show how wrong the current system is.

go Wales!

BiddyPop · 20/07/2015 16:08

I've had a card since my mid teens (for all organs except my asthmatic-y lungs). First DM signed it, then DH. DH had his before he met me also.

DH and I actually had a conversation when DD was tiny about her organs and found that tricky. But actually both agreed we would donate if it came to it.