Opting out of organ donation

[ringme]

So the law has changed and this spring the NHS will consider you to be an organ donor automatically if you don’t opt out. I haven’t had a chance to really consider this all yet, WIBU to opt out at this stage until I have time to think about it or is that a selfish move given that 408 people died last year waiting for a donor?

What will you be doing?

www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/faq/what-is-the-opt-out-system

Nobody has yet explained HOW the new system creates an increase in available organs over the old system, and despite my reading around I can't get to the actual answer.

Comparing the two scenarios, opt in vs opt out, I'm unsure practically HOW this new system causes organs to be harvested that would NOT have been donated under the opt in system.

Consider the following scenario:

Mary is brain dead on life support.
She has never opted in (only 27% of us have) so the transplant service are currently ignorant of her wishes:
Her family are approached sensitively about her wishes.
As far as I can tell, these are the possible answers:

1. She would donate everything
2. She would donate some organs but not others
3. She did not wish to be a donor

And the family will either be aware, or unaware of her three possible choices.
And if they are aware, they can either honour, or refuse to honour each of her three possible choices.

So the transplant service approach the family and ask, can we have Mary's organs, do you know her wishes?

This is what happens:

A. The family explicitly know her wishes, and intend to honour them, so they answer thus

1. Mary wanted to donate everything.

Outcome: everything is donated.

1. Mary wanted to donate some but not all.

Outcome: some but not all are donated

1. Mary didn't want to donate at all

Outcome: nothing is donated The outcomes will be A1, A2, A3. Family explicitly knows Mary's wishes, and explicitly honours them, and the transplant service carry them out.

B. The family DON'T explicitly know Mary's wishes.
But they want to do honour what they think she would want, so they presume on her behalf, based on their intimate knowledge of her and in the context of their live for her.
They make the decision they think best honours what she would have chosen.
Outcome: B1, B2 or B3.
Transplant service carries out B1 B2 or B3 based on the family's proxy decision on Mary's behalf.

What other possible scenarios exist?
These.
C. Family knows Mary's explicit wishes but intends to veto them.
D. Family doesn't know Mary's wishes, and cannot or will not make any decision on her behalf.

What I want, is for someone to explain to me exactly how the new system differs from the old and in which circumstance they would NOT take organs under the old, opt in, system but WILL take organs under the new one.

Because as far as I can tell, right now the family get to represent Mary's wishes, (either honestly or dishonestly) and the transplant service respects that decision.

What's going to change that will suddenly provide so many more organs?

Which scenario will suddenly yield Mary's organs under the new system, that would NOT under the old?

I think opting out is fine it's your decision (although I don't agree with you) but I also think you shouldn't be allowed to receive an organ should you need it.

I do find it hard to wrap my brain around why someone would opt out? You are dead, you don't need your organs anymore. You could save someone else, why wouldn't you want to do that??

Another scenario is there are no relatives eg homeless person dies and if there are a lot of people like that they are all now opted in. It is fairly common too with older people that not a single person is still alive in their family and no one goes to the funeral and that kind of thing.

fuzzystar would you say that to parents of a child who is dying and who don't want their child to be cut open for organ transplants?

I agree with some other posters that it should be a case of if you're not willing to give blood/organs than you should not be able to receive. Including dependants. Obviously health needs to be taken into account but if you can then you should. It's about not being a selfish arse.

We've recently joined a new doctors surgery and I've opted in as well as opting in my 8 year old. It's such an awful thought but to not, when we could potentially help many many people, would be worse.

@xenia it's very unlikely that a homeless person/very old person organs would ever be suitable for transplant. There's only a really small % of people who actually are suitable. Even smaller % when you are talking about children's organs like heart/lung.

And with regards to the PP saying about being cut open for the organs to be taken - what do you think happens with a post mortem?!

I can’t imagine how someone must feel to have their organs taken away... when they’re dead. 😶

I’ll never understand why anyway wouldn’t donate.

I can see why some don’t like the opt out, but it took me a couple of years to get around to actually registering as an organ donor, not because I didn’t want to, just because I kept either forgetting to do it while I could or it didn’t really cross my mind until brought up. In that couple of years there were most likely a fair few people who would have donated organs but died never ‘getting around’ to registering.

If someone is dead set against it then they can find the 5 minutes to opt out, opt out of saving a life. Rather than finding the time to opt in to saving a life. Seems pretty fair to me.

Baracker there will be people facing death who won't have family or friends who could answer these questions. In that scenario I guess that if the person hasn't opted out (and there will feasibly be people who don't know about the system, or don't really understand it) they will use their organs assuming consent. Whether that person would have wanted their organs harvested would be irrelevant.

If the transplant people want more people to sign up, then they need to allow women to sign an opt out, regarding use of their reproductive organs.

At the moment the register gives you the choice to choose to donate some or all of your organs but it worries me that other organs may be added without notification. I feel very strongly about not donating my reproductive organs or limbs (should either become commonplace in the U.K.).

Following TigerOnATrain's earlier post about the mother of a donor attempting to contact the recipients, is it possible to specify no contact? If I donated a loved one's organs I wouldn't want anyone contacting me, and if I received an organ I wouldn't want the family of the donor being able to make contact.

And with regards to the PP saying about being cut open for the organs to be taken - what do you think happens with a post mortem?!

My Dad had a post mortem and it broke my heart. Mum didn't need one but I very much doubt I could have said yes to organ donation even if it had been possible.

I do think the assumed consent aspect of organ donation could be challenged legally, in a similar way to how data protection laws have been revised. With GDPR they stipulate that:

"It must be obvious that the individual has consented, and what they have consented to. This requires more than just a confirmation that they have read terms and conditions – there must be a clear signal that they agree. If there is any room for doubt, it is not valid consent"

Binting that raises a thorny issue that the most vulnerable (no family) will be the most at risk of having their bodily wishes disregarded. The concept of the more vulnerable you are the better you become a prospect for donation despite your wishes is ethically worrying. Nobody to speak for you? Oh dear.

However, the projected huge increase in donations can't possibly come from the small number of people who are isolated without family. Those extra organs must be projected to come from somewhere else.

Ultimately yes I think it is selfish as you don’t need them after death.

I completely support organ donations and feel strongly that family should not be able to override the wishes of the donor, but Jesus, they need to ensure the support is there.

Sadly, I don't see this happening

I think either opt-in or opt-out systems are irrelevant, when your family can make the decision regardless. That's where the problem lies imo.

I carried my first DS to term, knowing he wouldn't live long, to donate his organs. It was the hardest thing I've ever done but he saved 2 other babies lives. It brought me comfort to know that even though I lost my baby, 2 other families didn't have to lose theirs. We saved theirs. It's an odd but incredible feeling.
They can have whatever is good enough out of me when I'm gone, I've always felt that way. My DH was always against organ donation but having our first DS changed his mind and he is firmly on the register now. If god forbid anything happened to our other 2 DS's, we would donate their organs too.

If you've always been on the register OP I wouldn't opt out while you think about it. Stay on it. If for whatever reason you become dead set against it, then you have the opportunity to opt out.

If I donated a loved one's organs I wouldn't want anyone contacting me, and if I received an organ I wouldn't want the family of the donor being able to make contact.

Yes absolutely. We asked for no information and were just told what had been taken and transplanted.

I'm wondering. Hypothetically, if an extra register was created, one that in effect was based on the original, opt in principle, with extra layers of specification about specific organs, and possibly regular contact with those on it to ensure up to date consent...

Wouldn't recipients have greater peace of mind? If you were to receive an organ, wouldn't you rather you knew it came from the "definite" register than the "maybe, maybe not" register?
A donor who had explicitly given their unequivocal, specific, recent consent for that organ? As opposed to receiving it from the opt out register where you know it might have been harvested without consent, possibly from someone with no loving family to speak on behalf of their wishes?

I imagine most people would prefer to know for sure that that organ was given freely, willingly, and by a person who had given their specific consent, rather than having any question mark hanging over it.

@ Barracker well, actually they’re unsure that it will make any difference in itself.

In countries such as Spain where opt out has been in place since the 70’s, the difference is only just starting to show, and that has more to do with the support and communication being offered to families than the fact they have the opt-out system in place.

So to all intents and purposes opt out is just a paper exercise at this stage.

I agree Baracker. That would make me far more comfortable than the new system.

I've emailed the register team to ask how they are making people without internet aware and whether they will communicate changes to the types of organ should it happen. Their reply to the latter will decide whether I amend my details on the register or opt out and tell DH what they could have.

If I opted out now, would I be opted back in again when the new system starts?

Where can we find more information about this? I am more than happy to donate any INTERNAL organs, but I'm not happy about things like skin or face - which I know does get donated. I'm not really sure why though. I get that at the end of the day I won't need them, just feels weird to me. I'm not sure if I would accept a face transplant either - but who knows at the end of the day? Very thought provoking...

I imagine most people would prefer to know for sure that that organ was given freely, willingly, and by a person who had given their specific consent, rather than having any question mark hanging over it. the thought that someone has to die in order to receive an organ is a hard enough one to get your head around, and indeed made me question for a while whether I even should want to receive an organ, knowing that my potential happiness at an improved life would come at the expense of the grief of someone else.

The idea that those organs were taken without any prior discussion with anyone is chilling and in fact would make me reconsider whether I should in fact receive an organ at all.

And before anyone says “I bet you wouldn’t be saying that if you were in the position of needing an organ” I am in that position. I am fortunate at the moment, I am in decent health, but my only prospect of a long-term future is a transplant. In fact last summer my health was so bad that they were considering me for the urgent list but I was ineligible due to pulmonary hypertension, and so they put some interim measures in place which have improved my quality of life since then but are not a long-term solution.

I carried my first DS to term, knowing he wouldn't live long, to donate his organs. It was the hardest thing I've ever done but he saved 2 other babies lives. It brought me comfort to know that even though I lost my baby, 2 other families didn't have to lose theirs. We saved theirs. It's an odd but incredible feeling.
@jaseyraex that's one of the most incredible things I've ever read on here. So much respect to you. Just amazing and such a selfless act. Have you shared your story with any of the Organ Donation pages on FB who share stories about organ donation?

My concern is for people living and working in the country e.g. resident for 5 years on a work Visa. Their family is often abroad. If they die as suitable donors would their organs be harvested? I mean for all intents and purposes they are a British resident working and living here, have an NHS number etc. If assumed consent is used to harvest their organs but family are not given the chance to veto and would have done so based on religious or cultural grounds what happens? Would they be able to sue?

How does it work with tourists?
International students could also be in the same boat. I'm sorry if my questions are stupid just curious

I think people are getting themselves very confused and unnecessarily so. You are not going to die away from family unless it is your heart that will be donated. If you heart isn’t viable for donation then you die with your family and only then are taken away for the other organs to be removed. I know this because I discussed in detail about doing this with my daughter. She was dying from heart failure, her heart would have been no good for anyone so she would die in our arms, it’s only if you are donating the heart that you are kept ‘alive’. A brave parent chose to let our child have their child’s heart, I thank them everyday for what they’ve done and thanks to them my daughter is running around and laughing.