Organ Donation Opt Out

[BackforGood]

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Just seen on the News that it is hoped organ donation will become 'Opt Out' rather than 'Opt In' by 2020, if the change in law gets through the final stage in the Autumn.
About time, IMO.
It was changed in Wales in 2015
Research shows that 80% of people would be happy to donate their organs, but currently only 37% have got round to signing up.

People who choose to, would still be able to register to 'opt out' , but this will hopefully mean more organs available for the 6000 currently on the waiting list.

In most circumstances, the talk about organ donation begins days in advance once it becomes clear that a patient will not recover. There has to be rigorous checks and rechecks to ensure the patient meets the criteria and this takes time too. The organ donation team are experienced and sympathetic. The family have as much time as they need in most cases to make an informed decision based on all the facts available. This will not change.

@DiamondsBestFriend have you read any of the thread?

No one is saying your body is the property of the state. Whether it's an opt out or opt in system. It's always up to your NOK.

“No one is saying your body is the property of the state. Whether it's an opt out or opt in system. It's always up to your NOK.”

Then it’s not a true opt out system

NOK can and do override the persons wishes. They need consent, a legal requirement, and without it, no donation

Legally if you're on the ODR then that is considered consent. Previous poster was correct, NOK have no legal right to override your consent.

In practice it won't happen without the family's consent, but this is for compassionate/pragmatic reasons, not legal ones.

astrid thanks for confirming. At the very least it seems like there needs to be a lot more done with regards the benefits of donation, the process, how important it is to have open discussions with your loved ones etc. Otherwise I can see we’ll end up with a high percentage of people who haven’t opted out, but whose relatives continue to decline permission because they aren’t sure it’s what they really wanted.

I’m on the donation register and wouldn’t opt out if the system changes. My family knows my wishes and whilst i would generally expect them to follow them, I’m aware there may be some situations where they feel unable to do so. For example if I died when my children were young and they could not deal with it, then at that point I would absolutely want DH to withhold consent - in death as in life my children’s well-being would be my primary concern.

@Astrid2 clearly you haven’t actually read my post because I pointed out very clearly that the decision is down to the next of kin at the end of the day. But once a law is passed to make donation opt-out it’s much easier to change the law to remove nok consent which would ultimately make your body the property of the state.

We should never presume that organs are there for the taking unless the intended donor says otherwise. It’s a slippery slope

I'm full agreement with opt out, I'm not religious though and believe that once I'm dead, I'm dead

I'm not claiming to speak for all religions, but,I believe many people who have a religious faith, would say it is their soul that is everlasting, and they have no need for their earthly bodies once they pass from this world. So having faith doesn't prevent you donating your organs. Indeed, I'm sure their are some that would argue doing what they can for others is very much a part of their faith.

I don't think it's a simple issue and I don't think it should be simplified or that people should be vilified for not agreeing to donation.

I agree no-one should be vilified if they have given it serious thought and decided they want to opt out. To my mind, the current position needs changing (as per proposal) though, as the number of people who have 'got round to' signing up, doesn't reflect the number of people who would be happy to donate their organs. The 14% or whatever the number is, who have thought about it and chosen not to, can still opt out, but most people - as the research shows - are quite happy to donate should they be able when the time comes, but just haven't got round to signing up.

In most circumstances, the talk about organ donation begins days in advance once it becomes clear that a patient will not recover.

Is that a linkable bit of data Astrid2 ? As I would have expected that organs could be donated from unexpected traumas such as RTA deaths, etc.

As I would have expected that organs could be donated from unexpected traumas such as RTA deaths, etc.

In this country organ donation is a very controlled, planned process and it takes a fair bit of time to arrange not just because of approaching family, but getting a full medical history, consent form the coroner and placing the organs. No I haven't got a link but I work in this area.

Meant to say sudden death is basically a contraindication to being an organ donor because of the lengthy process.

@BackforGood I don't have a link but am a theatre nurse with some experience with organ donation.

Even in unexpected trauma, there still needs to be checks and discussions had, the same as in illness. Although while this doesn't leave as long to discuss before hand , the patient is on life support so can be maintained for a time to let families decide. Obviously this can be a lot more difficult as it may be sudden.

You can only be a donor in very strict circumstances too. Almost always after being on life support in ICU, so you'd likely have been there at the very least a day for the talk of organ donation to start with your family.

No it certainly doesn’t take days, more like hours. Obviously it takes time for brain death to be confirmed etc, but once the family are asked their consent this question is only asked once and if the answer is no then there is no further discussion on the matter.

And how incredibly crass to suggest that the family have days to “come to terms” with the process...

Most donations happen off the back of unexpected deaths and as such most families have to both come to terms with the unexpected death of their loved one and then be quizzed as to whether they want the organs to be donated.

@Astrid2 except the conversation about organ donation is not started until the possibility of death is more of a certainty, so to suggest the family have extra days to come to terms is wrong, as the family will be holding on to the possibility of their loved one pulling through without having been faced with the possibility of having to make the decision re organ donation.

And I speak as someone who has been in icu on life support where the conversation was never had with my family.

What I said was that once it becomes clear that the patient will not recover, while the checks and rechecks are done to confirm this, the doctors will have a discussion with the family about this and also ask them to consider organ donation. If they say they aren't sure they will be given time. If they say they no then that's the end of it.

In ITU, patients don't often suddenly die. It will be a deterioration over hours or days that the family will be fully aware of.

Thanks @Reallybadidea and @Astrid2

Also I didn't once say for families to come to terms with it. I said for them
To make an informed decision with all facts available

I will most certainly opt out...and most people I know have said the same. Whilst I'd most willingly donate an organ to a family member wherever possible, there is no way I'd want to donate to some random person after my death. Health tourism springs to mind in a big way. It should remain as opt in, in my opinion. And I speak as a retired nurse - I've seen the system at first hand.

My mum was kept alive artificially for what felt like an eternity after being declared brain dead. I had to answer some very personal and intrusive questions about her and her lifestyle, and there were hours and hours and hours of waiting while her body was operated on and matches were found.

I sat with my mum while she was being kept alive by machine - my mum, but not my mum because she was already gone, but her hands were still warm and I could still feel her heart beating.

Her sudden death was made more traumatic by the donation procedure and there was no support made available to me once her organs had been removed. All I got was a text at midnight from the theatre nurse to say the surgery was complete and my mum’s body had been taken to the morgue.

I dgaf if it makes me a bad person, but if I had the choice to make over, I’d not agree to her being an organ donor again. I took no comfort from it - and out of the numerous people her organs helped, only one got in touch to say thank you. Rightly or wrongly, I feel quite bitter about that.

So, I will be opting out because, as I see it, it is for my family to decide if they have the emotional strength and resilience to go through the process.

I didn’t, and I regret agreeing because years after the fact, it still causes me a great deal of anguish.

I'm so sorry it was so difficult, Refuse.

I think people do need to be able to hear your story alongside the persuasion to be on the register - we need to be informed about what we're consenting to.

I really want to be able to formalise a "yes, but only if family are in agreement" position. So far as I'm concerned, my body should belong to them, not the state, in the event of my death.

@RefusetheLies I’m so sorry that it was so hard for you. to you. Please can I just say some organ receivers never find out who their donor is - my mum certainly didn’t - and then therefore cannot reach out to show their gratitude to the family. I know given the chance my mum certainly would have done so (feels guilty for not being able to etc) and I hope that knowing this will make you feel slightly less resentful towards them.
Sending hugs to you and so sorry for your loss x

Cannot edit above post... just to clarify my mum never found out who her donor was because she was told they were not allowed to tell her. Apparently when she had her transplant they were not allowed to tell receivers who their donors are. X

@Lot666

So you wouldn't donate your organs in case a foreigner received them? Thats a bit racist isn't it?

"@Ethelswith
Surely if you don't opt out you are giving that yes anyway?"

If you opt in by default, then it's not up to you/your family. I would not be 'giving' anything. My organs could however be taken, irrespective of what I or my family thought. Because under an opt-out system you have never been asked at all. And I object to that. I don't see it as the same thing.

Others will it it differently. I'm posting to point out that, even if my position is rare, there are people who are firmly pro-donation, but who are anti this proposal. Because I do dislike it when dislike of this proposal is equated to a selfish anti-donation stance.

Let's hope to god you opt outers never need an organ or a loved one never does. It's incredibly short sighted to opt out on principle.
8 people could have their lives saved by your organs and you're denying that as a 2 fingered salute to the government.

The opt out system is to catch those that actually don't give a shot what happens to them upon death but haven't got around to signing the register.
The most important thing we can do is speak to NOK to let them know your thoughts on organ donation.

It's so depressing the amount of young people dying because they need an organ, the government try and do something about it only to be met with backlash.

You cannot conceive the desperation and frustration of sitting with a loved one who is dying in front of your eyes as the clock ticks down.

I say that as someone who has also donated all the organs of a loved one and waited while the process was done, my feelings are irrelevant, my mum wanted to donate as she knew her grandchild would be on the receiving end from someone else one day. It wasn't about me and never was.

Titsalina has presumably not read my earlier posts. Or has spectacularly misunderstood the information in one (if I was one of the swathe of posters she is criticising).

There is no hope for me that I shall never experience an immediate family loved one needing a transplant, and dying after one was not found in time. It has already happened

And that is why I post. To point out that not everyone directly affected by death that could have been prevented/delayed by transplant supports these proposals.

And that an opt out may not necessarily mean the organs cannot be had. They will still be available, just for the asking. They are not however there for the taking.