Donor consent law is being changed...

[flirtygirl]

Aibu to have expected more information before they changes the law, did they do a consultation? I feel miffed that it is now going to be deemed consent and you have to opt out.

But what if the system is down or the opt out which is digital and online, did not get stored properly? What about when you move and change address? Do you have to tell every medical practitioner manually as well?

There is no info it seems on what this will mean. If you have info or any helpful links please let me know, thanks

My LO was an alcoholic and what they do is test every organ anyway. Bizarrely for us, he was able to make a liver donation, but only one kidney. The process is that they talk you through every possible donation and you agree or not in principle and then they test the organs suitability. Those that are not suitable can be donated to science. If you agree. There is no reason why a smoker couldn't donate kidneys, eyes, skin, I guess?

I cba scrolling back to see which poster asked "would you really die" - but yes! Why is that so amazing?

having been in a hairy situation, I can say that convinced me even more. My wishes are no extraordinary measures, which would include transplant but actually now I'd say no blood either and no I'm not a JW!

Just let me go if something happens and I'm going.

none of this has anything to do with the donor list - it's the presumed consent that really worries me. The Wales example is interesting, clearly not the only person who is worried about this.

But then of course the question arises as to whether, if you live a certain lifestyle which would make one of your organs ineligible for donation in the event you become eligible to donate, should you be denied an organ in the same situation? After all that’s what people are arguing should happen in the event of opt out isn’t it? If you opt out of organ donation you shouldn’t be able to receive an organ, by that logic, if you are a smoker for instance, you are making your lungs and probably your heart ineligible for donation and should therefore not be eligible to receive lungs or a heart in the event you need one. After all,living a certain lifestyle could be seen as equal to opting out, no?

I don't think it's right that NOK get to decide when someone has opted in. That choice should be taken away.

Both me and DH are on the donor register. We both have said they can have anything the like. I know though that if I had died first and doctors asked DH's parents for consent they would not have given it even though they knew how he feels.

I would be happy to give my whole body to medical science but DH is not happy with that. If he goes first though I will

Rebel, you can't currently receive heart and lungs if you are a smoker or a liver if you are a drinker afaik

The idea that everyone would opt to live is something which I think only someone who has never been in the situation can say though.

I will likely need a heart transplant in the future. Not yet, I need interim surgery before that in order to buy me some time, but actually, I’m not entirely sure whether I am yet open to the idea of needing a heart transplant.

For one, if it gets to that point we’re talking about my health being so bad that I will likely be at risk of death at any point. That’s not an easy way to live even if you know there’s a potential lifeline around the corner somewhere.

But for me the hardest part of knowing I might need a transplant is that if I get added to the list I will essentially be hoping for someone to die so that I can live. And that sits really, really uncomfortably with me. I know that the person who dies so I can receive their heart will die anyway. But the fact still remains that when you go on that list and wait for the call you are waiting for a family to be plunged into grief and to celebrate that fact in order that you are being given a chance to live. If I thought that that family were being plunged into grief and that heart was being taken against someone’s wishes I’m not entirely sure whether I would want to receive one under those circumstances. In fact I’m not sure whether I want to receive one anyway given the circumstances under which it needs to happen.

It’s a gift of life, not an entitlement and at the point where I’m sitting hoping for someone to die is the point where IMO I will have lost compassion for others in the same way people think that not donating organs is lacking in compassion for those needing to receive them.

Maybe in the future organ donation won't be needed? With advances in medical science it could be possible to grow organs? I always used to donate blood until I had DS & had to have a blood transfusion & now can't donate, I'm on the bone marrow register & have been for years. When my late partner was diagnosed with end stage liver disease, I asked about being a live donor of a piece of my liver, I was told by one of the liver nurses that the criteria for organ transplantation of any kind is very narrow. One question I never asked is do they have to have a recipient for an organ for it to be removed or do they harvest all the organs & then match up what they can use?

Thing is, Sparkly, you can receive them after a period of abstinence from drink or smoking, but your other organs might not be suitable for donation after death due to your prior lifestyle. People automatically think lungs for smokers and liver for alcoholics, but being a smoker or alcoholic or regular drug user can have effect on all organs, not just the ones we think of. So Rebel's argument still stands.

This is quite emotional for me as I desperately need a transplant. I’ve already had a cardiac arrest and haven’t much time left. Im young and want to fall in love, travel and maybe have children. But even if those things aren’t possible, all I want to do is live

I know I’m not entitled to anyone’s organs. I know it’s a gift. I also know it’s not a magic wand to a better life. But I so want to live.

Not all patients who become organ donors die in theatre

Patients who are DCD die in an ITU with their family around once theyve been extubated. Families are prepped prior to this to let them know that there is a time limit on when their loved when actually dies and when they can donate their organs. Those patients arent extubated until the entire theatre and organ retrieval time are ready and on standby. These patients also dont always go on to donate so families are prepped for this too and its explained that should their loved one die within the time period they'll be quickly moved to theatre, should they die outwith the time period the organ retrieval team wont go ahead but they can still donate tissues.

Patients who are DBD are declared brain dead after testing in an ITU and technically die in theatre in that their ventilator is switched off.

Also once a patient is suitable for organ donation in that they/their family consent there's quite a while before the actual donation. There's more testing to be done, they're optimised with drugs/fluids, the retrieval teams are informed but it can hours if they're at another retrieval. There's a lot of time in between becoming a suitable donor and then actually going to theatre.

Just some more info for anyone worrying that you die and are instantly whisked away without any time to process.

One question I never asked is do they have to have a recipient for an organ for it to be removed or do they harvest all the organs & then match up what they can use?

Because of how involved the procedure is, matching is performed prior to removal:
www.odt.nhs.uk/retrieval/retrieval-process/

It's not like pulling a part out of a car, it's almost as complex a surgery as the implantation.

Regarding donation, a policy of presumed consent is particularly important to BAME recipients, since the rate of organ donation is much lower than the general population. It's not impossible to transplant organs interracially but a donor/recipient of the same race is more likely to have compatible antigens (though the number of compatibility factors varies wildly for different organs).

I think it's fantastic. You family can overrule the decision just like before but for those who have decided not to opt out, if their family are okay with it, then the assumption is that you are too.

And I like that we can legally opt out if we choose.
The register that says you are opting out of donating should also be the same register that opts you out of being eligible for receiving a donated organ as well. It should also refuse a "you've changed your mind" should you ever find yourself facing a diagnosis that may lead to you needing a new organ.

Well, my dad was a full on alcoholic, for 35 years prior to his death, but his liver was suitable for donation. His heart and lungs were discounted because he was too old (70+) so I don't think the you-cant-recieve 'because-poor-lifestyle stands. My Dad would have been ineligible to recieve but saved three lives and massively transformed a fifth four through his donations but posters on here are arguing he wouldn't deserve a transplant because of his alcoholism. Please, if this is you, do fo.

I know I’m not entitled to anyone’s organs. I know it’s a gift. I also know it’s not a magic wand to a better life. But I so want to live.

I really do hope a suitable donation becomes available, please hang on.

Apologies I see that allaboutevie already covered the DCD/DBD information, didn't see that earlier.

Also I seen a comment about someone wondering if they cut out organs and then decide they're not suitable, doesn't happen. Patients undergo testing prior to the operation to see how their organs are, if they get to theatre surgeons also assess them prior to removal.

I've been part of several organ retrievals where the surgeon has deemed the heart unsuitable and its just not removed, there would be no need to remove it

There is a lot of assumption that everyone who drinks has liver damage and disease, but that's not so, although other organs can be affected.

I think Rebel brings up in a very interesting point vis a vis lifestyle and organ donation and one that's becoming more and more pervasive when it comes to diseases like cancer. There is, sadly, a lot of victim-blaming mortality going on with this disease, scolding and hectoring (you definitely see it on here and even with regards to smear tests and HPV vaccine) and with other conditions ('a strain on the NHS') and I can see this being applied to organ donation in the future.

Like I say, Rebel would suggest my Dad shouldn't receive because of his alcoholism but he did donate, saved 3 lives, his liver was used, his heart and lungs not donated because of age, but everything else donated.

the idea that one's body belongs to the state unless you state otherwise is a very scary concept.

Your family still get the final say so this is rubbish. If anything, it means our body belongs to your family.

It's fantastic news. I can't get over some of the selfish and ridiculously dramatic comments on this thread.

And I wonder how many of the pro opt out types on here would be happy to donate their uterus to a trans woman in order to, you know, make them a biological woman?

NoCauseRebel, when the time comes, hand me a snooker cue and let the prospective trans woman fight me for it.

Your family still get the final say so this is rubbish. If anything, it means our body belongs to your family.

Which is exactly as it is at the moment, so why does it need to change? Surely family are much more likely to say no if they think the person might only be a donor by default. Whereas if they have opted in, it's very clear what their wishes are.

Ashes to ashes, dust to dust the words said over a body at the funeral. If I could save someone else's life or make someone see then what difference would it make to me if i was in the box in the ground. I'd rather someone could benefit from my death not just the beetles and bugs. Everyone has a right to their own opinions but is the government eroding our rights or just changing the system from opt in to opt out if you feel so strongly about it opt out make sure your NoK is in the loop, their wishes will be taken into consideration too.

Because too many people die right now. Too many people (including at least one close friend of mine) is a supporter of donation but -can't be arsed- hasn't got round to registering.

I suspect if the donation becomes the norm rather than the exception relatives will be less likely to say no.

Strikeout fail.

Given that it's effectively an opt-out, you could say that it's extremely selfish of people to smoke or drink when they should be planning to be organ donors.

I won't care what parts of my body they use to help someone else, doesn't matter, sex, creed colour or sexual orientation. I won't be around, but to prevent someone else going through misery then thats perfectly ok by me. I dont think everyone waiting on a transplant is wishing for someone to die in order for them to live, but how many people die each day in terrible circumstances that could help someone else live. Families are devasted everyday and doctors have to ask for them to donate their loved ones organs at least with the conversation opened up they will have an idea what that person would have wanted done. I also don't care if the recipient is an opt outer or that their life choices have caused them to need a transplant its all about helping fellow human beings out in times of need.