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

NoCauseRebel "Oh and the organ donation rate has actually dropped in Wales since opt out came into force. "

interesting!

About time the law was changed. Hopefully it will mean far more organs available.

So many people say they are willing to donate organs but just never get round to filling in the consent form even though it takes probably a minute.

I would think that anyone who is absolutely sure they don't want to donate will make the time to opt out.

"I don't care about the precious hissy fits of people who want to opt out"

Haha and you call me selfish

What about people with mental incapacity?

People who have lacked capacity for a significant period before their death will be excepted from the rule.

Wow, imagine if we allowed such emotion and morality to govern the criminal justice system or reproductive rights . . . oh, wait.

I've only read the first few pages, sorry.

My Dad died suddenly from a massive stroke and from our experiences as a family then, I would say that really if you want your wishes respected, you need to make this clear with your next of kin as in reality, it is they who will make the decision. Staff will ask them how they feel about it and talk about the body and the body parts as if they are the possession of the next of kin. As part of the donor process, you are given the option of donating to medical science, which I say because a PP has said that they opted out in order to donate to medical science, and on the whole if you have opted out that essentially means you have requested you aren't donated to medical science. But basically, your NOK need to be on board and prepared to enact ypur request because it is wholly and completely their wishes that are discussed

What about people with mental incapacity?
What about homeless people with no access or ability to opt out?

To my mind, this highlights the different between presumed consent and informed consent. I'm well aware these groups are supposedly "excused" (in itself is a sinister word to use in the circumstances) but this doesn't address the issue of those who fall between the cracks of the definitions

Even as someone who opted in decades ago I find it abhorrent for the state to assume ownership of our bodies in this way - and more worrying still, what happens if "targets" start being imposed for the number of transplants carried out?

It doesn't take an Einstein to work out what the implications of that could be ...

No worries Lockheart. Wish more people were aware of the option, donations are so desperately needed.

The kind of death you have to have in order to donate is really specific though, hardly anyone will die in a way that means they are eligible donors. There is no way this can lead to a mass harvest, it's not possible, and because of the whole set of things that have to be on place there is no way anyone with any understanding of the process could imagine that a target or quota was in any way practical or related to reality

And I hope they can live with themselves when their decision of cremating or burying a lifeless body is more important than allowing someone else's loved one to live

You are assuming they would say "no". Required request with appropriate processes produces an extremely high "yes" rate but with the family feeling part of the process and supported.

And if they do have a religious/philosophical objection to transplantation how are they going to feel if the organ is taken because consent was assumed?

There are alternative ways to gain consent without assuming it.

Perhaps we should go a totally different way with this.

Organs are being lost at the moment because NOK override donor's decisions or donor's wishes are not clear.

The issue is not whether people want to donate or not, but that doctors know their wishes.

There should be some mechanism where at 18 we have to state our wishes one way or the other and then this can not be overridden by NOK or the state. Obviously we need to be able to change these wishes at any time.

I think the reasoning behind opt out is that people are more likely to bother opting out of something they don't want than to opt into something they wouldn't mind but don't really feel strongly about.

If you had to opt in or opt out at a certain stage then these problems would be massively mitigated.

It is ridiculous that despite me having opted in, doctors would still have to negotiate with my NOK over MY body.

The opt out system isn't actually going to change the root problem here.

But at least we are having a conversation about organ donation here which can only be a good thing

To my mind, this highlights the different between presumed consent and informed consent. I'm well aware these groups are supposedly "excused" (in itself is a sinister word to use in the circumstances) but this doesn't address the issue of those who fall between the cracks of the definitions

But surely the same concerns exist with opt in? Anyone could fill out a donor card - no one checked that you knew exactly what you were signing and that you were giving informed consent.

My DP received a transplant 6 months ago, after waiting 2 years. He was so unwell that he had to stop working, he nearly died 3 times from massive internal bleeds (a complication of liver failure), he had no energy, he doesn't remember much of our DS's first months. I will support organ donation until I breathe my last breath because we all got our lives back the day that someone else lost theirs.

However.

Opt out doesn't work well, it's actually been shown to reduce the number of donations. Time will tell I suppose if it works in the UK, this being in the news does at least open up the conversation for families which can only be a good thing.

Also the whole opt in process of the past was essentially meaningless. There is no medical team in the country that would insist on removing organs from a card carrying opt-iner if the family didn't agree. In reality, what this will change is the first line of the conversation from, "I'm so sorry we have to have this conversation now, but I must ask you about organ donation" to "Im so sorry to have the converstaion now, but we nltice that x dodnt opt out of being an organ donor"

...you have to die whilst on a ventilator, in a hospital.

This is why I opt out because when it comes to end of life care who knows where the dark human mind will take the people who are supposedly have MY interests at heart?

The other issue I have with "organ donation" is, that it does not state who will receive your organs. Is it someone who is genuinely ill, no fault of their own? Or is it someone who through life choice is in need replacement parts?
Or your organs have been cut out and are unsuitable.... but great for scientific research.
It's just not black and white, and it never will be.

I'll be opting out- it's disgusting, it is a way they can sell our organs- just like they've bee doing it with our blood!

No-one is forced to give blood. Donated blood is used by NHS hospitals in the UK. Hospitals pay the blood transfusion service to cover the cost of things like blood testing, nurses, equipment etc.

Dp would feel desperately sorry for anyone getting his organs.

He is riddled with cancer, he has cataracts, he has pneumonia several times and the cancer has spread there. His stomach and bowel are passed their use by date and he had already had his spleen removed.

No sure what exactly there is left but if he suddenly died in a car accident would they test that his organs were usable or would they just whip them out and implant them before getting his medical file. (Not that the medical file would say anything because the hospital keeps losing his notes and have to make him up a new file each time)

Quite worrying when you think of it.

Oliversmumsarmy

The potential donor has to die in very specific circumstances - basically in ITU and usually ventilated.

The doctors will know about illnesses and medical history. Many tests are done before the organs are deemed suitable.

It is a personal choice to opt out of course. But it is also a personal choice at the moment. to donate loved one's organs.
So opt out if you must, but just hope that you are never the one lay dying while hoping in vain to receive a kidney.
I became a live donor in 2017, it wasn't easy but the alternative was unthinkable. It was a personal choice.

I would 100% want my organs donated. Everything. To anyone.

BUT I suspect if it was commonly understood how the actual donation is made then the appetite for donation would (sadly) diminish. The process is oversimplified and the narrow range of circumstances in which donation can occur is not well known. Coffeeismyspinach and Evie touched on this.

I had a kidney transplant from my amazing partner just over a year ago as a live donor. I cannot tell you how much it transforms your life, I can now be his partner and a mum ton my son.

Now donating as a live donor I think is an amazing gift, he put himself at risk and the recovery he had to go through just for me including12 months of invasive tests beforehand.

This was the correct decision to change the law to opt out, if you don't want to donate then opt out but morally you should not accept an organ if you should need one later. Once you see your loved one slowly dying in front of you everyday sat on machines to keep them alive, only then may you understand formerbabe.

Of course they look at medical files, donor recipients are among the most medically vulnerable groups possible. If you have ever had cancer, along with a whole load of other issues, will rule you out. Being an eligible donor is incredibly rare.

And the whole ventilator question, you have to be brain dead to donate. You know, actually dead.

I welcome this. DS1 can't have a lung transplant because of other things he's got wrong with him, but other people's lives will be saved.

I didn't know about this and will be opting out. I don't like forced consent.

And no, I wouldn't accept a transplant.

Oliversmumsarmy - if it's any consolation they wouldn't test his organs if he were DOA in the UK because there's currently no uncontrolled DCD transplant programmes currently active in the UK. In a lot of European countries they would though.

Metastatic cancer is also an automatic barrier to becoming an organ donor (and would be fairly obvious even without medical notes). They will occasionally transplant from someone with non metastatic brain cancer, but the drugs used to treat these cancers tend to render the organs unusuble. Organs are very well tested before transplant, speak to anyone who has received an organ and I bet you they'll have had at least one "dry run" to the hospital where they were then told the organ wasn't suitable.

I'm really sorry for what your family is going through.