To think no-one should be able to over-rule a dead person's wishes on organ donation?

[angelos02]

I was disgusted on seeing the news that 547 people that had wanted to be organ donors were unable to do so because family members over-ruled their wishes. The patient's wishes could have improved the life of over 1200 people.

How is this allowed to happen? I can't possibly imagine the grief that these people were going through but you can't deny another human being's wishes?

I think the decision has to be taken out of families hands if the person has signed the register. I have signed the register so that if I died (especially before my time) I can help save or improve other people's lives. A child could survive because they can have something I don't need. I understand it may be distressing for my family but I fucking hope that going against my wishes and depriving others of the chance of life is more distressing.

Yep U2 it's a crap club to be a member of.

You're all right about not knowing unless you're in that position, sorry if I offended anyone. I feel strongly about my own organs. My family do know that so hopefully they'll do what I want.

It's very easy to hypothesise about what you would do from the comfort of your sofa where you're not actually in the situation. But there have been posts on here from real people who have been in the situation and have felt they couldn't donate their loved one's organs. And someone who did donate and felt that their loved one was treated with complete disrespect and never would again. Those people deserve a voice. You cannot possibly say that they are selfish if you've never been there. Walk a mile in someone's shoes....

As for the argument that if you don't donate you shouldn't be allowed to receive, that argument has no place in a civilised society. How much other treatment do people feel should be conditional on what you're prepared to give in order to receive it? No fertility treatment if you've had an abortion perhaps? No blood transfusion if you don't donate blood, no cancer treatment if you' ex never been on the bone marrow register. And try telling a parent that because they're not on the donor register their child should die. Yeah, that's the society we want to live in. .

Great post wannaBe

Always love your posts on this topic and look out for them.

This article says very well why the wishes of potential donors shouldn't be overridden by families.
www.theguardian.com/commentisfree/2016/jan/15/organ-donation-families-block-transplant

This is why we should TALK ABOUT IT beforehand.

If my relatives felt that they would not want my organs donated, I would spend a lot of energy and time trying to explain to them why it was important to me.

When a death is a surprise (as most organ-donatable deaths are), people are not in a position to make a difficult and upsetting decision in a rational way. They will make the decision based on feelings.

If they know, and have known for a long time, that it is important to me that they say "yes", hopefully the feeling they use to make the decision will be
Trills wants that, yes
rather than their first feeling being
That is scary and a bit yucky, no

So you trust the state over your family?

I definitely would, because the decision of the state would be neutral and not subject to emotions. I could therefore count on my wishes being respected by the state but not by my family.

Talking about it would of course be hugely beneficial, but how can we really talk about it effectively when the NHS provides no information about what the donation process is likely to actually entail?

All the easily available information out there is completely focused on the donor recipients, there is nothing to prepare people for going through the process of allowing their loved ones organs to be donated, and I think that is a massive reason as to why people don't give consent despite knowing that the person had signed the register. They have fair reason to believe that their loved one had no idea what they were signing up to, or asking of their relatives.

Similar discussion here Another poster describes how she feels knowing that her wishes will be ignored when she dies.

If I died tomorrow who would get to decide whether I could donate or not? I have no partner, my children are young - would it be down to my cunt of a dad to go against my wishes? I am still legally married but my husband is long term in a psychiatric hospital. So who gets the final say?
I agree it is not talked about enough.

We will agree to disagree. I think that your body, your assets, everything you have including the meat you live in is yours and it is your right to choose what to do with them and others do not have the right to overrule that

Well, you can disagree, but the law is quite clear: dead people can't own anything. It's kind of common sense as well. The minute you die, its all over, you are no longer a person or a legal entity.

All that said, I entirely agree with the premise that relatives shouldnt be able to overrule a wish to be an organ donor. But legally its beside the point, and I can't see that changing.

"And try telling a parent that because they're not on the donor register their child should die. Yeah, that's the society we want to live in. "

Yes, well, I don't want to live in a society where my clearly expressed wishes can be over ridden and somebody who might have lived might die because my relations are overcome by grief and sentimentality. That's why my wishes about what happens to my body should be paramount. Just as my wife's about what should happen to my house or my books or my jewelry should be.

Didn't see but I'm in total agreement with you. I'm on the donor register as is my daughter. I think it's fantastic that in the event of my death that someone else can live on. The way I see it. A bit of me will always be here.
Some wo say whats the point of signing up, if. Your family can just disrespect your wishes.

It's only an 'if' anyway. You can feel as strongly as you like about being an organ donor, the likely hood is still that you won't be able to, no matter what your relatives do.

My dd is on the registrar, anyway as previously stated but heaven forbid if she was to die. I'd have no qualms about donating her heart. Because if it were her needing a heart kidney lung ect. I'd be hoping and praying someone would come through for us.

I've worked in theatre when the organs have been taking and can I just say that we are all absolutely respectful of the process. It's a very different atmosphere to general surgery where we might crack jokes or chat. We are very aware of the gift that is being made. I've been there when organs are put in, and again the fact that someone had allowed the organs to be donated is respected.

No more carving comments please.

I'm on the register, so is DH. Our wider family are very aware of our wishes. I am considering having my body left to science/ education for whatever science/ education needs. We've also discussed what we will do if we ever have to make this choice for our DDs (Touches wood) and it's to have 'Yes please, make something good come from this' as a reflex answer.

DH and I sometimes thing that while you shouldn't have to opt out, BUT if you do say that you don't want to be on the register AT ALL, you should be exempt from going on the organ donor list if you need one (with a year long exemption time if you rejoin). Not willing to give organs? - don't expect to receive one then. Other family members and children would not be included in your choice.

*think

And try telling a parent that because they're not on the donor register their child should die. Yeah, that's the society we want to live in

That needn't be the case- the exclusion could only apply to the adult who has refused to donate an organ- I don't think that the child/partner etc of someone who had opted not to donate organs should be excluded from receiving an organ because of their parents/partner's choice.

I accept it would be legally difficult to implement and runs the risk of "coerced" consent, so would be a difficult thing to do. However, I really do think that, from a moral point of view, if you are willing to receive a organ then you ought to be willing to donate. Otherwise how can you justify accepting an organ? And if you would except an organ for your child then, again, you should be prepared do donate your organs or those of your child. Not underestimating how hard that would be, and can understand why people say "no" when they are in shock/grieving etc.

I think whatever we decide has to be consistent. So, if your body is yours and you make the decision and that is that, relatives should not be able to decide at all. That means they can't say no when you said yes, but equally, they can't say yes when you have not opted in.

I think the process of organ transplant has been successful to date due to the understanding all round that it is a very sensitive area and has been dealt with as such. If we start making rules or judgements around it we take the risk of messy up all the good work that has been do so far. The whole team that work in this area in a hospital have built up a wealth of knowledge and experience dealing with each case individually and l would hate to see the government getting involved. I have experience of organ donation in my own family but still totally respect each relatives decision to say no or else we undermine the great gift it is for a relative to say yes.
On a different note My dh has made funeral requests that l know l won't do if he dies first because they would be very difficult for me to do being the person l am. I have told him that and he says it's up to me in the end as he won't be there but in an ideal world that would be his choice. Not to do with organs but funeral.

YANBU. My family have always been registered donors. I grew up thinking it was the right thing to do and agreed to go on the register myself. My Mum always said she would donate everything except her eyes, because she wanted to see heaven.

When I was 14, I was diagnosed with a degenerative eye condition, affecting both eyes. There was no cure and the only treatment at the time was cornea transplantation. I was told I'd probably need a transplant within 10 years. 14 years later I was put on the transplant list. 14 months after that I received my cornea. It wasn't plain sailing - one operation became 7, I have had multiple rejection episodes, because my cornea was so degenerated I needed a bigger graft and few corneas are suitable anyway, so my wait was longer. The treatment led to me getting a cataract which was only removed last month and complications meant I not only risked losing my graft, but losing my entire eye. It's been 20 years since I was diagnosed and 4 years since my transplant. It's been a long and often very painful and scary journey. For a bit of tissue.

But it was a bit of tissue that someone chose to give, or that their relatives chose to give or didn't stop. My vision has improved - only in 1 eye (the other is virtually useless). Every day I am grateful. My Donor was age matched and died around Christmas time too, but because of them I am able to see DS growing up. I think of my Donor and their family frequently, always with gratitude, they gave me my sight back, and to imply that they were 'carved up' for my benefit is hurtful, disrespectful and offensive to them, their family, the transplant team, my medical team and me.

Because of my experience, my mum changed her wishes and now will donate her eyes too. So will others who previously thought eyes didn't make much difference that I have spoken to. Even my 8 yo DS has agreed to be a donor. My original views still stand - when I go they can take whatever they can use and what's left goes to science. If anyone overruled me on that I would be devastated if I was able to be aware of it (of course I won't be, but...).

I can see why people who are grieving don't want to donate, but knowing that 3 people per day die whilst waiting for an organ, that one person can help up to 20 others, and that there is a severe shortage of organs and tissue because not every donation is useable (although they can't discover that beforehand in many cases), I couldn't ever prevent anyone who wants to donate from donating. It's never pointless to try. Long, drawn out, gruelling, harrowing, quite possibly. But not pointless. If organs and tissue are healthy they can be used, regardless of age. The only thing that precludes donation is if the patient is known to have vCJD (Mad Cow Disease). Even HIV+ patients can donate and their organs are used for others who are HIV+. Some drugs do mess with organs too much and that's sad, but that's why it's even more important that otherwise healthy people donate.

I am for a system where people still have a choice, but it is 100% their own and once they have made their preference clear it is a binding contract which cannot be overruled by NOK or other family. Of course you should also be able to change your preferences should you wish, just as you can now. But people should be required to make that choice - whether they opt in or out - and it shouldn't continue being an 'optional extra' form to fill out when you are getting your driving licence etc. We all know how people feel about form filling. It should be mandatory to either opt in or out in order to get a drivingblicence/register with a GP etc. I don't mind people choosing for themselves, but I am not happy at the thought that my family could decide not to carry out my wishes. However, until we have a better system in place the most important thing to do is to speak with your loved ones and tell them your wishes. It's a difficult conversation to have, but the biggest reason that people don't donate their loved ones organs and tissue currently is because they've never discussed it, and the question comes as a shock, even if it turns out their loved one is on the register already.

As soon as you start to define this in terms of 'if you won't give, you won't get' you are turning organs into a commodity. Is that really what we want to do?
Organ donation currently is a gift. It allows a patient to access a different form of treatment for however long that organ lasts. Nearly all those who get an organ will make it out of the first year post transplant, most will still be alive at 5 years, some will still be alive at 10 years. Without the organ though some would still be alive at 10 years too though probably in less good health. Some will be well, some won't. Some will have been able to have children. work, enjoy life. Some won't. Some will die from their original disease, some from associated conditions such as cardio-vascular causes and some from the effects of the transplant. Long term immunosuppression required puts you at increased risk of cancer. The point is NOTHING is certain. Stats tell us what happens to 100 people or 1000 people. Nothing can tell you what will happen to you or your loved one. If we were to move to an opt out system or to over-riding the wishes of relatives, we are removing a pretty crucial bit of our autonomy over our own bodies and as the primary person to be consulted about what happens to our loved ones. You need to be damn sure that there is a greater good that far outweighs the consequences of that and with organ donation there is no such assurance.
One other issue which hasn't been mentioned so far I don't think is compliance. Not everybody 'takes care' of their transplant. Some resume harmful personal behaviour. Some miss hospital appointments. Some won't take their prescribed meds. If you agree to donate or donate a loved ones organs, it should be knowing that sadly you are making a gift that the person receiving it may not look after. Undoubtedly for some patients though, the thing that keeps them compliant with treatment is the very fact of knowing it was a gift. If you make it a commodity, you'll lose that.

I completely agree. I never thought about donating, until I read a thread about it on here. When I got married and then got a form to change my name on my driving licence I ticked the organ donor box, few weeks later I got a letter from the NHS thanking me for signing up to donate. DH saw the letter, said 'Oh have you signed up to donate your organs?' I said yes, he said 'Ok, fair enough.' And that was that. No issues, no problems. It should 100% be my choice, it shouldn't have anything to do with NOK. If I die first, I will definitely come back to haunt DH or anyone else who refuses to let the doctors take the things I don't need. Although DH plays in traffic all day so he'll probably go first...

I must admit I vehemently disagree with if you aren't on the donor register then you shouldn't be allowed to receive an organ. I don't want to live in a society like that.
I am 99.99% certain I would allow (god forbid) my children to become donors, but I would never want to see a family denied the chance to see their children (grown up or otherwise) receive a life changing operation just because they held different views to me.