Opting out of organ donation

[ringme]

So the law has changed and this spring the NHS will consider you to be an organ donor automatically if you don’t opt out. I haven’t had a chance to really consider this all yet, WIBU to opt out at this stage until I have time to think about it or is that a selfish move given that 408 people died last year waiting for a donor?

What will you be doing?

www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/faq/what-is-the-opt-out-system

I could not believe my ears when she said that one of the problems was that improvement in car safety meant that there had been a reduction in suitable donors.

Yes, it often seems that those using emotive language in favour of organ donation forget in most cases someone has died in tragic circumstances to make the transplants possible.

If car accidents were reduced to zero the number of transplants would drop and more people on the list would die. Reducing car accidents to zero would still be an unequivocal good.

Why does the altruism stop at viable organs? Why not sell body parts, and use the money to help others to live?

Had nice long hair when you died?? If you don't sell it to make money for needy kids you are scum!

Difficult. I'm so sorry for you loss. My child died from long illness. It's been years, but the pain is indescribable.

I could not believe my ears when she said that one of the problems was that improvement in car safety meant that there had been a reduction in suitable donors. I read an article recently on one of the hospital websites (can’t remember which) about a patient who had been put on the donor register for a heart and told that the average waiting time could be up to a year (iirc it was the urgent list as the wait time is now around three years for non urgent) but which then went on to say that as the holiday season was approaching there was the likelihood of a higher number of donors coming into the system. It’s statements like this one which honestly make me rethink whether it is actually the right thing to want a donor heart to become available for me when I most need one. And yes, stating that someone shouldn’t be able to receive an organ if they weren’t prepared to donate one is absolutely a moral judgement. You can dress it up however you like, but when you make statements like that you are judging people’s wishes.

I absolutely agree that if you say now while you’re healthy that you would accept an organ then there needs to be some thought process around what you’re expecting in order to receive that organ - you’re hoping that someone will die at the right time, in the right circumstances, with the right organ which will give you that opportunity of survival,and at the same time you’re expecting that there would be someone on the list at the time while you wouldn’t be prepared to be one of those people. But that’s a far cry from saying that someone who is in need of a transplant now shouldn’t be allowed to receive one because they hypothetically wouldn’t have been prepared to donate when they were able to do so.

And when you are told that you need an organ transplant it becomes a whole different scenario. For me, knowing that I need a heart transplant means that at some point, someone will die, a family will be left grieving while I am hopeful that a heart will become available which suits my profile.

Even the thought of waiting for the right person to die is something which has taken a long time to come to terms with. But the idea that I would hope that the right person will die so I can live is for me completely outside any kind of realm of ok. I could never, ever publicly express that people should give their organs or those of their loved ones in the hope that I might receive one. That is crass in the extreme, and those who publicise these kinds of things need to do some thinking along how to not make giving an organ look like celebrating a death in order that you can celebrate a life.

I have read that even if every single suitable donor donated the maximum number of organs on death, there still wouldn't be enough to go round. As previously mentioned road traffic fatalities have dropped in recent years, which is a good thing, but this means most people dying in hospital have conditions that make them unsuitable. Opt in is never going to be the answer.

I look forward to the day when artificial organs are an option for people, or when they can be grown in a lab. There is some success already with artificial hearts which can keep people alive in the short term.

Whatever you choose isn't unreasonable to you though, it's your own choice.

Others will consider your choice unreasonable, but that's just the way things are with pretty much anything in life.

Your body, your choice.

Absolutely re artificial organs, and also constant advances in medical treatment which will hopefully negate the need for some transplants in the future. After all, not everyone who needs a transplant would be eligible for one for various reasons, so advances in treatment would do more than just reduce the burden on the donor list iyswim.

@Xenia
transported a fair way and double the charge paid. If opting into the donor register came with it a legal obligatin to ensure I could be buried in a graveyard within 2 miles of my house with a full grave and grave stone and perhaps a right to buy a burial plot there too for the family I might reconsider my opt out..

Ah so it's not a principled objection, you just want more of a bribe. Bleurgh.

It’s been kept quite quiet

It really hasn’t. I’ve been posting about the change to opt out for quite a few years now, before the change even happened as I was posting about hoping the change would happen. I guess that could be down to how important transplant is in my family’s life but even still, it wasn’t hidden. Posters in hospitals etc about it. I don’t know how people didn’t know about the change.

Once it was clear my DB was never going to recover, the first thing I said was that he used to carry a donor card (I remembered it from when I was a child). They still had to get permission from other relatives.

I stayed there throughout. They performed further scans to be absolutely certain there was zero brain activity. They then performed tests for gag reflex, eye reflex, breathing reflex. And repeated them with any relatives that felt able to be present watching.

Whilst they were trying to make arrangements for theatre time, throughout the period, the Neuro ICU staff treated him exactly the same as before - they still spoke to him as they were doing anything. They still checked as regularly. Towards the last few hours, his condition was deteriorating - they still treated him. I remember telling him 'Don't bugger about now, we don't want to waste anything'.

As the time drew nearer, I sat and read the most inappropriate and simultaneously appropriate book to him - the Hitchhikers' Guide to the Galaxy. They waited for me to finish. I read about how Man and the Babel Fish disproved the existence of God and then, for an encore, Man decided to prove black is white and promptly got himself killed on the next zebra crossing.

I walked alongside the trolley to the door of theatre. They stopped there so I could tell him to go and be a hero. And then he was gone.

Whatever the rights or wrongs about presumed consent or not, the one thing that is clear from having been there is that there isn't a scrap of difference made to the quality of care a donating patient receives compared to one who is simply going to die.

Cacheral That is the sad side of transplant. Many of the organs do come from things like car accidents because of the brain damage that is common from them. Another sad side of transplant is that hearts tend to come in around Christmas time or just generally in winter again because of car accidents. My daughters heart that she received was in October.

I don’t think anyone is saying how amazing transplant is without also acknowledging the heartache that is involved in the process. The way I try to look at it is, one person that has passed away is saving the life of another and although your heart is breaking you are (potentially) saving someone from that same pain. Before my daughter received transplant I wanted to donate whatever we could of her organs if she passed away while waiting, because I wanted to make what little of her life she had important and if I could stop someone feeling the way I was that would be good. It wouldn’t take away the hurt though.

I chose not to send a letter or ask for more details because I didn’t want to make the donor family’s pain any worse than it already was but every time I feel my daughters heart beating strong, I think of the little one that passed away and I think of their parents and how brave (I personally think) they were at such a hard time and I silently wish them well in my head.

Let them use whatever they can. What am I going to do with them?

If you would be willing to take an organ if you or a family member needed it, then you should be willing to give one.

They are absolutely no use to the deceased and it seems an atrocity that they could go to some use but because someone decides ‘no’ people die.

If someone chooses to opt out then that’s their choice, but I would have a caveat on that saying they can not receive an organ either

these threads always bring out the very worst in specious arguments.

blood donation is not relevant. You can either do it or you can't, and if you can do it you may not be able to for logistical reason - the English blood service has been cut back massively as an example.

all the other stuff about obesity, dangerous sports etc etc is also utterly irrelevant.

beyond me why you wouldn't want to donate after brain death - who wants to carry on as a ventilated corpse? No, reuse won't make you any less dead or make grief any better for those who care about you, but it could save another person and another family from the same thing. And you will be DEAD. You won't know.

the conspiracy theory stuff isn't worth anyone's time.

WaterOffADucksCrack I would not accept and receive one either.

I also would not accept one for my child under 18, we have spoken at length and she agrees with me and when over 18 she is free to make her own decision. My daughter over 18 also wanted to opt out and said she doesn't want to take an organ but she didn't want to die. She also added she may take a living donation from a family member, we have this in our extended family where an aunt gave a cousin a kidney. From family was not deemed as bad but no one I know seems to want to accept strangers organs.

And you will be DEAD. You won't know.

Their family will know though. It may be a comfort to them to think that they've likely helped to save lives and that a part of them still continues, but that isn't always the case as evidenced by a few posters who have donated their child's organs or those of another family member. As I've mentioned before on this thread my Friend was left traumatised by the experience of donating her husband's organs. It brought her no comfort, quite the opposite,

I'm on the list and happy to donate almost anything but if it's too unbearable for my family when/if the time comes then I wouldn't blame them for refusing.(They're aware of my wishes and also on the donor list, but no one knows how they'll feel until they're actually there.)

I also would not accept one for my child under 18, I don’t believe parents should be allowed to make that decision for their child. It’s up there with parents who refuse blood transfusions IMO and I think the courts should get involved in order to decide what is in the best interests of the child.

I’m sure your under eighteen child agrees with you because she feels she has to, based on your opinions.

What nonsense you wouldn’t accept an organ donation for your child. Utter bollocks. You would watch your child die would you?

If you would be willing to take an organ if you or a family member needed it, then you should be willing to give one.

You seriously believe that the vital treatment of a person other than yourself, hence 'family member', should be dependent on the actions of another human being? You honestly believe that's a good idea? Let's take that further, shall we? 'Well, Mrs X, you are infertile. The NHS can offer you one round of IVF, but only if your healthy sister donates one of her eggs or acts as a surrogate for someone.' 'Well, Miss Y, you need dialysis, but we can only offer this is your husband gives one of his kidneys.'

One person's healthcare treatment should NEVER be dependent upon the actions of their loved one or family. Dear god, are people really this lax about bodily autonomy, or just when it comes to 'dead' people?

Like someone above said sticking to your principles is different to wanting and wishing for your child to die. But I would also pray and hope it would never come to that.

I have never agreed with medical treatment when the chances of success are low or just prolonging life so in those circumstances, I am absolutely steadfast.

If they was a high chance of a good outcome I would have to weigh up my faith with my personal feelings and also what my child wanted.

However I do not believe that my child just agrees with me as aged 8 I had already made up my own mind on this matter and watched as a close family friend battled a system that sought to override her decision. It went to court and she won the right to refuse the treatment and she also survived, still here over 30 years later and had been healthy since recovery.

Some people do know their own minds you know. Just because you believe differently does not make it so. You can absolutely know your own mind from a young age.

I do not agree with organs and procedures prolonging the life of those who are so very sick that they gain a year or two of a more painful sick life, to die anyway.

I would never prolong my own life with painful treatment if I was going to die anyway. I would never want an extra 2 years in pain with no quality of life if I had 6 months left. I would just try to make them my best 6 months.

I also would not accept blood transfusions and blood products but did not want to put that here as this decision is about organs. However only a few organs can be donated from living donors and none I know of without blood being used (or expected to be used) in the surgery so that already limits how I could or would help.

I also have moral objections to receiving organs from certain people.

And I don't see why bodily autonomy is seen as king for abortions but not for organ donation. If you can decide what's right for your body for your reproductive decisions then I can decide what's right for my body when I die. Do the people on here think that those people who choose abortion and make a decision for their own bodily autonomy are selfish or only selfish when it comes to bodily autonomy and organ donation?

In October 2018 I was taking what I thought would be my last breaths. I had been waiting on the lung transplant list for 2 years and I had deteriorated considerably to the point I was on such a huge amount of oxygen I couldn't move away from the oxygen concentrator in the my house. My DS was 11 at the time and DH and I had done our best to prepare him him for the worst. It was heart breaking to watch him watch me slowly suffocating to death.

Eventually I ended up in intensive care with a partially collapsed lung on top of my already measly 12% lung function and I was on a non invasive ventilator 24/7. I was advised to sign a DNR because they said if my lungs stopped working and they put me on a machine, they would never work again on their own and my next of kin would have to make the decision to let me die.

I was pushed to the top of the transplant list and 2 false calls later I was so very lucky to get some beautiful lungs. I couldn't even have imagined how my life would change. It is amazing to be able to breath, I realised now that I have never known what it was like to breath 'normally'. My donor family are heros to me and my family. I will never be able to thank them enough and I can't imagine how difficult it would have been to go through the process. To have been able to think about someone else in such a time of grief is so amazing and selfless.

I am writing a letter to them now. I hope that they will accept and read it. Maybe they will reply too and I will get to know a bit more about my donor. Right now all I know is that she was 23. So very young.

Organ donation is a miracle. Thank you to everyone on the donation register.

There’s a vast difference between refusing treatment for yourself and refusing it for your child. Bearing in mind that for every one who has a more difficult time following treatment there are countless others whose lives are immeasurably improved by it.

@eminencegrice

What on earth are you going on about?!

Exactly what I said....

For those that would opt out of organ donation and chose not to be a donor should not be allowed to have one if they ever needed one.

If they have a loved one who needs an organ then I find it extremely hypocritical they would be desperate for their loved one to find a donor and happily received it, but they still wouldn’t allow their own to be use upon their death.

I’m not saying the loved one shouldn’t get an organ donation (based on a family member opting out) of course they should, if they’ve said they’d do are they’re too. I’m saying it’s very hypocritical of someone to greatly receive one but not be willing to give

That’s amazing fluffy.
A relative had a donor kidney she’s had years of happy life she otherwise wouldn’t have had and took part in the transplant games

And as for parents who wouldn’t agree to they’d children receiving an organ, well that blows my mind!!!