To not like the organ donation pressure?

[AtSea1979]

Don't get me wrong I fully support an opt out rather than in policy.
However DD (7 yo) has come home with a form and is asking lots of questions and it all seems a bit much. She has asked me what would I do if she died and whether I'd let them remove her organs etc and whether I'd do the same if it was me. The head cheerfully informed me they have an important letter we all should sign.
I find it all a bit bully tactics, surely it's a personal choice and nothing to do with anyone else.

I'm very squeamish about it.

But squeamishness does not trump morals/logic.

If you think you should morally/logically donate, fck the squeamishness. Put it aside for just 5 minutes. Sign the register and never think about it for the rest of your life.

I hate the thought of organ donation. I can't bear the thought of them hacking organs out of me even though I know that's rediculous. I also have heard stories about not actually being dead and them taking organs while people can't move but are alive like something out of a horror film

My logical brain knows this is rubbish but it's still what I think of when I imagine it!

Saying that, I am registered because I would accept an organ so I feel obliged!

"No one has said that, from my reading of the thread. What some posters have said is that if people are willing to accept organs for themselves or their loved ones/children, but are not willing to donate (medical etc reasons aside) then the position is in the views of those posters morally reprehensible or hypocritical." so how else do you interpret people saying that if you wouldn't donate then you shouldn't be allowed to receive an organ. There is even a poster upthread who states that if you wouldn't sign yourself up to the register then you, and your children, shouldn't be entitled to receive an organ should you ever need one.

That is wishing people dead however you dress it up.

Take an example:

Person A is not on the donor register and feels that they don't want to be. Or alternatively they have opted out because, like me, they don't want the state to have presumed ownership of them when they die, but have discussed their wishes with their family so consent would be given anyway, the world just doesn't need to know that at this stage...

Person is then diagnosed with kidney failure, meaning they have to go on dialysis three times a week, and their life is severely limited as a result. So they visit a consultant. Consultant says to them "sorry, but as you're not on the donor register you are ineligible for a donor kidney. Therefore you will need to continue to undergo dialysis until such times as your body is no longer able to withstand it. At that point you will die. Sorry about that, but if you hadn't been so selfish in the first place then we wouldn't be here. Never mind that now you're ill yourself you're not actually in a position to be a donor any more anyway, it's the thought that dictates your treatment.

Of course that is wishing someone dead.

And quite apart from that, the cost to the NHS of e.g. Keeping someone on dialysis for ten, fifteen, twenty years, plus the drugs they have to take, plus the fact they probably can't work and would therefore need to be supported by the state, PIP/ESA/housing benefit etc etc, and all because of a hypothetical chance that if they were to die in a small amount of circumstances that would mean their organs could be donated, they wouldn't want to?

Just think about that for a second.......

Even when it's not inconvenient people still don't like the idea of it though. After DDs birth I donated the placenta and cord blood. One other woman on the ward did. The rest declined. We were talking about it on the ward and the other women didn't like the idea of it rather than any cultural reasons. It all just goes in the incinerator so to me seemed a bit of a waste.
I was told that ours was used and DD has saved a life.
I am interested (not being goady) in why people decline. If we can find out why perhaps some more information can be released about how it works etc if that's putting people off?

I'm finding this thread really interesting. And whilst this is a really emotive subject, I don't think it's descended too far in to a bun fight (Bertrand's comment aside).

Unless I've missed a post, I actually don't think anyone on here has outright said 'I wouldn't donate but I would accept'. Unless I've misread, I think the handful of people who have said they wouldn't donate have also said they wouldn't accept either.

I also find it heartening that the majority of people seem to be pro donation.

I can't remember who said it, but the pp who has a moral objection to the opt out system and who will be opting out if it comes in to force, but then instructing their family to donate their organs has it sussed IMO.

True, you run the risk of family not respecting your wishes, but you'd hope if you've made it clear, that they would.

Totally disagree with opt-out. The state should not make decisions above the family. A lot of medical staff are also against opt-out. The GMC and RCN are in favour of opt-out, however, when they should really be remaining neutral on the subject.

It's a good thing to discuss the subject, but some people need to be a bit more sensitive. It's one thing to agree to give your own organs when you die, but another one entirely to accept to consider it when your own child dies suddenly. Even if you have made a decision on principle on a normal day, you have to realise that everything changes when your world comes crashing down and you are made to picture horrible things.

And the register we have now allows people to state a wish either way - yes or no. So if you want to be a donor, put your name down. If you don't, then you can put your name down for that too. Or you can nomimate someone to make that decision for you.

People have asked what reasons there can be to opt out of donation. I would like to share my decision.

I am very pro donations but I have a problem with a few things.

1. I saw a documentary about a danish girl who they said was brain dead and they wanted to harvest her organs. She woke up. I want to be very sure that I am dead. Till there has been a satisfactory explanation how this went wrong and how the protocol is changed so it never happens again I won't be a donor.

1. I live in a country where you either opt in or opt out. I want to be able to state a few conditions. I want one of these conditions to be how and when the organs are harvested. I want to have painkillers regardless of my condition. They can still measure some degree of brain activity till three days after death.

3.I want to be able to refuse to donate to drug users, murderers, sex offenders etc. this is not possible in this country.

1. I want to be able to state that if I die and if I have family in need of one of my organs that they go first if it is a fit. It is my body, It is my choice.

1. I want to be able to make a list of people who I do not want to donate to because they have hurt me so mu h in the past that I would rather let them die.

I actually would like to be a donor if the above problems can be solved. Till then, no I am sorry. I would donate a kidney or marriw or half a liver to a friend or family if need be during my life.

I am a blood donor and organ donor. I am because I know how important this is, that we have as much blood and organs available for people in need.
I also understand that for religious or medical reasons not everyone can be one.
That is not my concern. Everyone can make a choice and I made mine.
I wish everyone did the same but I can't make them.

Sometimes people just get too caught up in their lives and routines to come around to signing the forms so I think to push them a bit is a good idea.

Maybe after this thread more people will become donors and that would be an excellent thing. You can be literally saving lives

I am interested (not being goady) in why people decline. If we can find out why perhaps some more information can be released about how it works etc if that's putting people off?

If we are talking about relatives.

You are told by your relative's consultant that there is nothing more that they can do. The life support is of no benefit because they will not recover.

The subject of organ donation comes up. You agree to speak to the specialist nurse. You have to wait two hours to do so (in our case, not a criticism but she had to come 80 miles). During this time your relative is being kept alive. You wonder if they knew this would happen or if they would choose to go now.

On arrival you go through discussions/ the consent process. It is explained to you that they have to match the organs before they are taken, check medical history etc this will take 12 hours. Again, you wonder if your relative fully understood this and you have doubts. Then despite that DM had made her wishes clear online we had to go through the full description of all (despite DF saying he didn't want to hear it and would just sign, this bit could be changed imo). You are told that there is no guarantee that it will be successful, if DM took more than 30 minutes to die it would have all been pointless.

It is a difficult, harrowing process. DM was kept alive from 9am to 3am the next day with no guarantee it would be a success. It is a big decision to make when you realise the person involved didnt know all this.

I'm not sure if this was made more public it would help with rates.

"Or alternatively they have opted out because, like me, they don't want the state to have presumed ownership of them when they die,"

really? stick it to the man....? or bring childish?

Just think about that for a second

I've thought about it. The reality is, that the person would be still be on dialysis anyway, because not enough people are signing up for organ donation.

So you can turn it around if you like. You could say that the people who won't sign up for organ donation are making that wish a reality. Works both ways.

vlier

what an honest and interesting post, I am sure many people will recognise themselves in it.

Basicbrown thank you for answering. Yes this is what we had with my cousin although all happened quickly in an accident and aunt and uncle couldn't decide in time. They have said to me if they'd known more about it or at least had the conversation with him (he was a teenager) it would've been easier. Everyone's experience is different though and it's very tough

I was thinking more about that say no for themselves. Especially things like placenta where no one dies and it's just incinerated anyway.

"really? stick it to the man....? or bring childish?" nope, being informed, and also involving my next of kin in a discussion about what happens to me after my death, rather than giving that authority to the state.

Opt-out is an illusion you see. Even if we have opt out in this country, nothing actually changes. If you've not opted out then your NOK still have to give consent for your organs to be donated. If you've opted out then your NOK can still consent for your organs to be donated. Or not. But what opt-out does do is open a loophole for the government at some point to be able to state that if you're not opted out then NOK have no more say any more, and your body will be removed at a time of their choosing for the organs to be harvested. Never mind that you're talking about telling a grieving parent that their child needs to be taken now so they can harvest their organs.

the key here is communication. Currently as things stand around 50% of people whose relative is on the donor register still refuse consent. And that is presumably because those discussions have never been had, because people assume that signing up to the register means that their organs will be donated. they won't. Not unless their NOK consent to doing so. So if you opt out of the process, actively make a decision to do so, then you should also have the conversation with the people who know and love you best about what you would want.

And for all those saying "I am an organ donor," no you're not. If, in the unlikely event you were to die in such a way as to make your organs potentially viable for donation, then, and only then will you be an organ donor. And only if your NOK consent to that happening.

I want to be able to refuse to donate to drug users, murderers, sex offenders etc. this is not possible in this country.

What an interesting point, I had never considered this. What does everyone else think? If you knew your organ was going to one of the above would you still donate?

I find it all a bit bully tactics, surely it's a personal choice and nothing to do with anyone else

Of course it has everything to do with everyone else! If your 7 year old needed a kidney, you'd sure as shit think it was your business why people weren't donating them, wouldn't you?

In your cosy little nothing to do with me bubble its easy to be dismissive. You're bothered by a letter and a few innocent questions from your kid? Try being bothered by waiting years on a transplant list or watching your loved one die while waiting, then see how you like the "pressure"

Abbey the truth is the only reason we went through with it is because I knew dm carried a donor card. Without that it would have been even harder.

As an itu sister, I have seen many organ donations take place. What the school has done is open up a conversation about what your dd's wishes would be if she died and also what you would want too. It is a very specific set of circumstances that allow you to become an organ donor. In all deaths, very few can actually donate their organs (for hearts, lungs, kidneys etc. Tissue donations can be carried out until a certain point after death).

Even if a form is signed to say you opt in to donate, when it comes to the question being asked whether you would want your organs to be donated, it is actually your next of kin who makes the final decision. By opting in however it shows your next of kin your wishes when you cannot answer for yourself. For what it's worth, anything I have that can be used can be taken when I die. I've experienced it first hand and have seen how carefully it is all handled and how much respect is given to the donor and their family for allowing the possibility of someone else to live despite losing someone through usually tragic circumstances.

"vlier

what an honest and interesting post, I am sure many people will recognise themselves in it."

God, I hope not.

so how else do you interpret people saying that if you wouldn't donate then you shouldn't be allowed to receive an organ

First, I apologise, I missed two posts that said if you weren't willing to donate, you should not be allowed to receive. But I cannot for the life of me find a post where anyone advocates that for children. Rant said, I haven't had coffee.

Most posts on those lines however don't say people shouldn't be allowed but they shouldn't be willing to accept if they aren't willing to give. A moral judgement rather than what the rules should be.

I personally think it's more complex than that, but equally I think that hands being thrown up in horror at the idea of discussing death and organ donation with 7 year olds ridiculous. The lack of normalisation of these issues adds to the pressure on family members at the worst time in their lives.

That aside, I agree with everything else you've written. People shouldn't die because they are hypocrites.

Basicbrown I'm sorry it was so drawn out for you and your dm. Can I assume it was a non-heart beating donation? Sometimes they can take so long and not always be successful but please be safe in the knowledge that if it was successful your dm has given several people a chance of living longer

so how else do you interpret people saying that if you wouldn't donate then you shouldn't be allowed to receive an organ

In the difference between theory/opinion and practice. If someone refuses to donate yet is happy to take they are hypocrites, and should be ashamed of themselves. A part of me thinks they shouldnt be allowed to recieve if they would never give, in practice I would of course let them have it (not that it would have anything to do with me anyway).
We don't have to like their stance.

But organ donation from dead people isn't the answer long term is it? In 50 years time I suspect that when I tell the story (if I am still around) I told above young people will be shockshockshock did they really used to do that? By then it will probably be possible to grow them in the labfrom stem cells removing issues of rejection

Sure, but in the interim unless we're willing to let people die when we could save them (and plenty of people want their organs to be used if possible to save them), then this is a debate we need to have.