What do you think about the new organ donation law? (Opt out)

[Nameitychangity]

Not sure if this across the whole NHS but the leaflet received today is from NHS Scotland.
The organ donation law is changing on 26th March, we will now have an 'opt out' system which means that if you do not specifically register yourself as NOT wanting to donate your organs and tissue after death, then the law will allow your body to be used for organ and tissue transplantation.
What do you think? I'm already an organ donor so it doesn't change things for me personally but it does leave me slightly uncomfortable and gives me the feeling that you do not have control over your own body after death, in fact the state 'owns' it unless you specifically make an effort to declare otherwise. Is this right?
Leaflet also states "if you do nothing it will also mean you agree to certain medical tests and procedures that may be carried out before your death as part of the donation process".
What do you think of an 'opt out' system? Is it fair enough that if you don't register that your body can be used after death?
YABU - I'm dead, they can do whatever they want with my body and I'm happy for my organs and tissue to be used
YANBU - the system should remain opt in and 'opt out' systems are not right

@Dinosauratemydaffodils

I'm uncomfortable with it despite being on the register since I was 17. Not sure why, both dh and I ticked the box quite happily when we applied for driving licences and we'd both respect each others wishes.

I feel exactly the same. I feel like opting out, purely as an act of protest.

It just doesn't sit comfortably with me. It feels like state control which I want to rebel against.

Your body is just a bag of flesh, it isn’t any different to a raw chicken in a supermarket.

I think those who refuse to give their organs are very selfish. I’m always amazed by people who believe weird myths around organ donation, my mother genuinely believed if you were a donar and you ended up in ICU you wouldn’t be treated so they could use your organs. That is the level of stupidity we are dealing with with some people.

@SimonJT

Your body is just a bag of flesh, it isn’t any different to a raw chicken in a supermarket.

I think those who refuse to give their organs are very selfish. I’m always amazed by people who believe weird myths around organ donation, my mother genuinely believed if you were a donar and you ended up in ICU you wouldn’t be treated so they could use your organs. That is the level of stupidity we are dealing with with some people.

That's what you choose to believe.

The fact that you think that everyone should believe the same as you proves that you're far more stupid than any of those people.

If it doesn't take long to opt out, then it doesn't take long to opt in either.

it's quite a weak argument though, tbh. The reason opt-out is being seen as a better of the two alternatives is that opt-in wasn't bringing anywhere near enough organs. As with premature babies, the further our medical knowledge and abilities advance, the more people who would previously have died are now living longer lives. The quality of those lives is rarely debated on a superficial level, but it is still part of the discussion.

Liver and kidney transplants are pretty routine now, heart and heart & lung transplants are on the way to pretty much routine. If we want to accept that we have medical capabilities to do that, we have to find a way to get those organs and asking people to donate by means of an opt-out is probably the least-worst way of getting more organs knowing that opt-in wasn't cutting the mustard..

What we don't really have is a good end of life discussion going on, in families and within wider society. Some people do, and if you've ever had a family member go to a hospice or end of life care, it can come as a massive shock to meet people who talk about death as part of their daily lives.

As far as I'm concerned I'm fine with opt-out (I was also pretty fine with opt-in) but i want it to be impossible for my family (or anyone else) to override my wishes in this respect (which ever way i choose).

I also want there to be a (insofar as possible) watertight end of life protocol for removing life support, with again my wishes paramount over my family if i have made them known. We should also all make wills and living wills as part of our regular routines, reviewed regularly and particularly upon life changing events (marriage, birth of children, death of spouse etc etc).

Given advances in medical matters i also want guarantees (cast iron as possible) that wealth is never going to be a determining factor in selection of donated organ recipients. In fact this, for me, is one of the most important aspects of it. Emotionally, i tend to the "if you're not a donor i don't want you receiving organs" but pragmatically i know that this isn't the best way to select recipients and i don't want that to play a part.

Sometimes i think it must be so much easier if your faith or beliefs rule out things like transplants and blood transfusions. You don't have to make any decisions because they are made for you. And then i think, we have free will and good brains, we must be able to come up with a good system.

Even stupid people have rights. People who have faiths and beliefs have rights. People who just have feelings and instincts and worries have rights.

We don't know everything yet. We don't have tricorders or instant scans. We don't know how consciousness or life works or if people who are "brain dead" are definitely, 100% gone forever with absolutely no sensation or understanding.

You can dismiss my feelings as ignorance, but I can equally dismiss yours as arrogance.

And it is all mere ignorance out there, then why haven't the government tried a huge education piece before leaping to this? It's not for lack of mechanisms.

They could have pushed an organ donation communications piece the way they've pushed covid comms.

They could have asked more people to sign up and explained it all. Instead they thought "let's just say its happening by default, including eggs and ovaries etc because eh, why not, they're just random bits too".

@ Brefugee but opt out makes very little difference to the number of organs donated. The absolute key factor here is communication with relatives about your wishes.

Even when the organ donor pages e.g. twitter/fb etc talk about the change in the law, they underline the fact that you need to speak to your next of kin, “do they know your wishes?”

And the reality is that opt out is making people talk,not just about the fact that they would donate their organs, but in many cases the discomfort at the idea of assumed consent on behalf of the state. People are uncomfortable with that, and that is the factor which will lead more people to opt out.

As for myths surrounding organ donation, you only have to look at the amount of COVID conspiracies that are out there at the moment to see how easily people are convinced of something. To many of us this seems stupid, but many of these theories are being delivered by so called medical professionals, and as soon as that happens it gives them a sense of credibility.

While these kinds of beliefs are out there there will be people who are afraid they could be true.

@ zzizzer to be fair this was in consultation for a long time to bring the law in line with other countries who have the same.

It’s not just a case of the government just bringing in the system, there will have been numerous consultations about this, and it definitely was in the news for years before it came into effect, and there were in fact numerous threads about it on here over the years.

I remember commenting on threads about this even before I was diagnosed, and that was over 4 years ago.

It was talked about, but a lot of people likely didn’t really think about it, because they don’t believe it applies to them.

I opted out because I own my body.
However, I told my DH and DC that if all treatment has been exhausted and I can’t be saved, they can donate my organs.

@zzizzer there was a public consultation on it www.gov.uk/government/consultations/introducing-opt-out-consent-for-organ-and-tissue-donation-in-england/consultation-on-introducing-opt-out-consent-for-organ-and-tissue-donation-in-england so there was an opportunity for people to give their opinions well well before it was ever introduced

I think it is a wonderful thing and glad we have this in England and Wales already. I have seen what organ donation can do and also have been involved in caring for patients whose organs have been donated - I have been there at the time of their death - and it is one of the greatest privileges to be involved in.

Families will still be able to say no - though I find it desperately sad that some do despite the patient’s clear wishes to be for donation.

Most people die in a way that doesn’t allow for organ donation. When it is appropriate it is handled with amazing sensitivity and skill by incredible specialist nurses (called SNODs which I always think is unfortunate). We treat the patient with the upmost respect and a huge thank you to everyone happy to donate and to all those who have allowed loved ones organs to be donated, it is honestly the most wonderful gift.

To all those saying they would opt out - would you be happy to accept an organ from someone else if you needed it?

but opt out makes very little difference to the number of organs donated. The absolute key factor here is communication with relatives about your wishes.

The discussions around this have been going on for a long time. I'm not in the UK (but in a country that also recently introduced this, AFAIK) and i hadn't realised it had come into being.

I did say in my overly long post that what is needed is more communication over end-of-life processes. I think it is absolutely appalling that if i were divorcing an abusive arsehole who knew my wishes re organ donation, and said "nope" because at the time of my death he was my NOK. That is something I'd want to be addressed.

I also think it is far too soon to see if opt-out makes any difference over opt-in. Time will tell.

As for the talk about it and COVID-conspiracies - this is a problem in many countries and it comes down to people not having the first idea how to form a logical argument (what do they teach them in schools these days?) and conduct proper research. It is down to the reluctance to disbelieve experts with decades of experience, even when it's 95% of the experts, compared to a cobbled together meme that nobody really knows the origins of. It comes down to misguided attempts by bodies like the BBC to provide "balance" where that turns out to be climate science experts up against Domenic Lawson etc etc

We saw how the Brexit referendum was handled, misinformation, lies and a head-in-the-sand approach etc etc. There is no reason to suppose a discussion around organ donation would be any different since people apparently don't have the tools to weigh arguments.

As i said, if you have a deeply (or even shallow) held religious or other belief that your organs should remain where they are after your death, that's easier than someone wading through reams and reams of scientific research and other arguments because the decision is taken away. So pretty much how opt-out takes away the decision - except that for opt-out you actually get to choose for yourself.

Personally? I think so many people either don't care or haven't given it a second thought that opt-out was probably a shrewd decision on the part of the government because it covers the middle ground by having a much bigger pool of potential donors, and has plausible-deniability in "but there was discussion, and you can opt-out anyway".

It's an ongoing and interesting ethical discussion but it is never ever going to come down on one side or the other. People have to make the decisions for themselves. And they can only do that if they have a) the ability to assimilate and evaluate information and b) get good information in the first place.

@countbackfromten

To all those saying they would opt out - would you be happy to accept an organ from someone else if you needed it?

It is not a quid pro quo system. Quite rightly.

Most people aren’t saying they absolutely don’t want to be donors, more that they’re uncomfortable with the opt out system or only want to donate some of their organs.

Ultimately it’s not their decision anyway and I don’t think anyone would want to see people excluded from the transplant list because their next of kin would say no.

Yes, I know its been discussed at a high level, but not everyone will have seen or been able to participate in this. Presumably also many said no and have been ignored.

My point was, there hasn't been any systematic campaign from the government on the topic (no mass "opt in to help out" campaign for example).

There also hasn't been any attempted personal communication on the actual change at all. My GP has sent several generic texts about covid several times in the last year, and we had a letter from some central place last year too, so I'm guessing the NHS has some capacity to do this.

If the reasons that the government don't attempt either persuasion or personal communication are (a) its an emotive subject that people are stupid about and (b) they're worried about passivity and people not taking time to tick a box, then surely those should be reasons not to enforce the system unilaterally either?

I have personally known 3 kidney transplant recipients.

One was successful and the recipient lived a long and relatively normal life before dying from something else 30 or so years later

The second had 2 failed transplants before dying of their disease

The third had a year of constant pain, complications and re-admittance to hospital before the complications killed him 11 months later. He said he'd wished he'd never accepted the transplant and to be honest he'd probably still be here now as he was doing well on home dialysis.

Yes it's a small sample but an organ transplant is not necessarily the life saving operation that many here seem to think it is.

To all those saying they would opt out - would you be happy to accept an organ from someone else if you needed it? To all those who say that opting out should mean you are ineligible for a transplant, would you be happy to receive an organ from someone who who could have been emotionally blackmailed into donating their organs because of the threat that if they didn’t they wouldn’t receive treatment if they ever needed it?

I only have two organs which work perfectly and would be suitable for donation (my liver and kidneys). They can have them if they like, I’m not going to be using them. They wouldn’t be foolish enough to try and use the rest of me with my medical issues, but THANK YOU to anyone who donates/Has relatives who have donated and THANK YOU to anyone who has given blood. Without whichever people donated in the early 90s I wouldn’t be here today. So thank you, thank you, thank you.

Yes it's a small sample but an organ transplant is not necessarily the life saving operation that many here seem to think it is.

Without the transplant patients will almost certainly die sooner or have a much poorer quality of life.

@AlternativePerspective I’m actually interested in the answers hence asking the question.

I'm one of the ones saying I personally have difficult feelings on the topic and have told my family I wouldn't want transplants. It's not the huge "haha gotcha" moment you think it is.

@countbackfromten

To all those saying they would opt out - would you be happy to accept an organ from someone else if you needed it?

Yes I would, if it was willingly donated. I would have a problem accepting a stolen organ.

I also think it is far too soon to see if opt-out makes any difference over opt-in. Time will tell. well, given that opt out came into force in Spain in the 1970’s, and the take-up of organ donation has only increased there in the past 10 years I think that’s a fairly good estimate as to how successful opt out is. (Not).

Yes I would, if it was willingly donated. I would have a problem accepting a stolen organ. but it wouldn’t be willingly donated would it? The organ would have been donated because that person feared the consequences if they didn’t agree to it. There’s nothing willingly about that.

@Mrgrinch to describe a donation as stolen is utterly wrong, there is a huge amount of amazing work done when there is the possibility of an organ donation by incredibly trained staff. Describing it in those terms does a huge disservice and is scaremongering.

@ Mrgrinch apologies, I only saw the last part of your post and assumed it was someone else hence my snippy reply.... :)