Organ donation

[Mumguilt12]

After a recent death in the family, Me and DH were chatting about our death and funeral plans etc. Cheery huh!

Anyway, I said the songs I wanted played at my funeral. And I am absolutely clear that if my organs can be donated, they should be. All of them.
If not, I’d like to donate my body to science. I’d like to be cremated.

He thinks organ donation is not nice. “I dont want them to cut me up etc” I am absolutely shocked by his negative feelings towards it.

I said if our kid needed a new heart, would he accept it and he said he would. Now I believe if you are willing to take, you should be willing to give.

He is certain that he finds it all a bit wrong and it’s not nice for the family left behind. I also said that I completely disagreed and I personally would find comfort in knowing my relative had saved a life.

I know it’s silly but a) if I go, I don’t trust him to follow my wishes b) I’m judging him. How can you not want to help a sick person?! I don’t get it.

He comes from a religious family although himself is not really into it (other than a general belief in god). Not sure if that’s part of his thoughts.

It’s really made me look at him in a different light. AIBU?

It’s times like these that I think we are really not compatible. I really value kindness and thinking of others and he… really doesn’t.

@Justyouwaitandseeagain

Xenobitch - It is not called organ harvesting anymore, it’s is called organ retrieval. Your account does not match with my experience. Donation only goes ahead when death has already been confirmed. There is no reason why you would be trying to ‘save’ an already deceased patient. The donation and retrieval teams are also purposefully separate to the medical teams who have looked after that patient. Everyone I know working in organ donation and transplantation has the utmost respect and gratitude for the gift those donors and their families give. I am sorry it sounds as if you have had a difficult/stressful experience.

Maybe the trust I worked in then. They called it 'harvesting', although that was 7 years ago for me now so it may have changed. I know the patient is technically dead but it is still hard to see a warm body on the table and not feel like it is wrong some how. Not rational, I know. The theatre I was in did not deal with organ retrieval that often tbh. Like you said, the upmost respect is given in each stage.

The shaming on this thread is awful.

I donated my sons organs many years ago now.

It was a gift, a gift that I chose to give. Had it been expected, or if people had called me selfish and started on about other families and using emotional blackmail I may not have been able to donate them.

It shouldn't be expected. It's not selfish not to put your family through the process, which is bloody hard IMHO.

Its selfless to donate, it isn't selfish not to.

We need to think of our families and what's best for them, as we do with wills, we don't call people selfish for letting our families have our belongings and not leaving it all to charity. Our bodies are the same,whatever makes our families happier and more comfortable is paramount.

Xenobitch

In terms of your question about opting out and the role of your family, my advice would be to register your decision and clearly inform your relatives that this is what you want to happen.

When families are approached under the new system, the nurses’ aim will be to support the family to work out what their relative would have wanted. If you have registered a decision - whether to opt in or opt, they still check that your family are not aware of any later change of mind/heart or a more up to date decision. If you would prefer your family not to be consulted, you can choose to appoint a nominated representative who you trust to uphold your decision and they will be approached instead (you can do this via the NHS organ donation website).

I do agree that if you would accept an organ you should also be willing to donate but I don’t think it’s a reflection on whether someone is kind and selfless generally .

@Justyouwaitandseeagain

Xenobitch

In terms of your question about opting out and the role of your family, my advice would be to register your decision and clearly inform your relatives that this is what you want to happen.

When families are approached under the new system, the nurses’ aim will be to support the family to work out what their relative would have wanted. If you have registered a decision - whether to opt in or opt, they still check that your family are not aware of any later change of mind/heart or a more up to date decision. If you would prefer your family not to be consulted, you can choose to appoint a nominated representative who you trust to uphold your decision and they will be approached instead (you can do this via the NHS organ donation website).

Yes, I did register my decision.. and the letter I had confirming that implied that it would still be up to my relatives anyway. Kind of renders any sort of opt in/out pointless.

Not quite. Your family will still be consulted. But as I said above, they are asked to consider what you would have wanted. This is to confirm that your registered decision is still accurate and that they are not aware of any change of heart. People are told about the role of the family so they can make sure they share their donation decision. When family know what a relative wants to happen, the vast majority will support that decision. Those who don’t usually have a very genuine reason why they don’t / feel they can’t. If you are concerned your family won’t support your decision, then the best thing to do is appoint a nominated representative who you know will do so. This could be a professional eg a lawyer you have briefed/instructed or a close friend or relative who you trust over and above your family. I hope this helps.

@Justyouwaitandseeagain

Not quite. Your family will still be consulted. But as I said above, they are asked to consider what you would have wanted. This is to confirm that your registered decision is still accurate and that they are not aware of any change of heart. People are told about the role of the family so they can make sure they share their donation decision. When family know what a relative wants to happen, the vast majority will support that decision. Those who don’t usually have a very genuine reason why they don’t / feel they can’t. If you are concerned your family won’t support your decision, then the best thing to do is appoint a nominated representative who you know will do so. This could be a professional eg a lawyer you have briefed/instructed or a close friend or relative who you trust over and above your family. I hope this helps.

Thank you.. that is very helpful. Since I had the letter, I keep thinking maybe it is something I should discuss with my parents. Although, I am sure you realise that is a difficult conversation to have. No idea how to start it!

I think the whole "I don't want them to cut me up" thing is a bit ridiculous, given that his body will either be eaten by worms or burned. I would struggle to respect someone who was willing to accept an organ for themselves or their child, but not donate one.

I'm also pretty sceptical of people who've opted out and say they would refuse an organ if they needed one. How many people a year actually die because they were offered a life-saving organ and said, "No, thank you, I'd be a hypocrite to accept an organ when I don't want to donate my own, I'll just die instead"? How many people actively choose to leave their children without a parent, or put other loved ones through a bereavement, for that reason? I expect the number is minuscule.

Starting a conversation will depend a lot on the views you want to get across and the views you expect them to hold.

If you know you don’t want to donate and expect them to feel the same way, perhaps keep it quite matter of fact… eg show the letter, explain you have registered to opt out and that you wanted them to know as your closest relatives. You could say that you would want them to support your decision if ever approached. You might want to clarify what decision they would make for themselves.

If you expect them to disagree, I would prep/rehearse various ways the conversation might go. I would still try to keep it matter of fact and use the letter as a prompt eg ‘I have made this decision and the NHS recommends I tell you, so you know what I want to happen.’ And have some answers ready to explain your reasons behind the decision in case they question you or try to change your mind.

Unless you have a difficult relationship or anticipate resistance, most families will appreciate having the clarity even it is a bit of an odd or awkward conversation to have.

@LateDecemberBackInLowB12 :
From one very grateful transplant recipient to the consenting next of kin of a donor, thank you so much.
I am humbled by your bravery.

I opted out just prior to the change in the law, I also would not accept a transplant, and I have a do not transfuse order in my file and wear a bracelet stating as much. I object to presumed consent, but I'm also uncomfortable with the ethics of transplant and transfusion. I don't judge anyone who feels differently though.

I've opted out, I don't think my organs would be any good due to ill health anyway. I wouldn't accept a donated organ, I had a cousin & one of my friends who had transplants & both had problems afterwards, my friend's donated kidney failed & she had to have it removed, she now has dialysis & is unable to go back on the transplant list. When my late dp was dying I offered to be a live donor for a piece of my liver but he passed away before he could be listed for transplant. I did donate blood before having ds but after having a transfusion without my consent I can no longer donate.

@ZoeCM

I think the whole "I don't want them to cut me up" thing is a bit ridiculous, given that his body will either be eaten by worms or burned. I would struggle to respect someone who was willing to accept an organ for themselves or their child, but not donate one.

I'm also pretty sceptical of people who've opted out and say they would refuse an organ if they needed one. How many people a year actually die because they were offered a life-saving organ and said, "No, thank you, I'd be a hypocrite to accept an organ when I don't want to donate my own, I'll just die instead"? How many people actively choose to leave their children without a parent, or put other loved ones through a bereavement, for that reason? I expect the number is minuscule.

indeed

Yes its a bit silly. It seems to stem from subconsciously wanting to believe that your body (and therefore "you") will still be the same after death, as if you are asleep. Of course it won't be, you'll be burned or rotting within days and "you" are gone anyway. This is hard to accept or even really understand for humans, even though we know rationally that is what happens.

OP if your main concern is that he won't follow your instructions after death, well keep in mind you don't have to follow his, on the minuscule chance you end up in this position.

One of my family members has had a heart transplant. Words of thanks will never be enough to express the depth of gratitude we have for the Donor and their family who in the midst of grief made a life-saving decision for my relative. Until this situation happened I realised I’d never had a conversation with my Husband about our organ donation wishes, we now know each other’s wishes and both feel comfortable with them. I am very squeamish about my eyes and have opted out of donating my corneas. I really believe organ donation has to be a personal decision but also believe you should not accept an organ if you would not be willing to donate yourself, unless of course you were a child and an organ was accepted on your behalf or an illness prevented you from donating your organs at the time of your death. I would not donate my corneas so would not feel able to accept one of needed. Many children and adults are currently in Hospital awaiting urgent transplants and sadly for some the call will never come and they will pass away. It’s an awful scenario waiting for the call as you know a family have to lose someone precious to them in order for your relative to live. Organ Donors and their loved ones will always be hero’s to me

Donation only goes ahead when death has already been confirmed

This is the problem I have with it. To me death means my heart has stopped beating and my lungs have stopped breathing, as well as there being no brain activity. People (maybe not medical people, I don't know) even use the term 'being kept alive by machines'. If my heart still beats and oxygen flows through my body then IMO I'm not dead, even if I'm not properly alive either. People can have my organs after I'm dead and not before. But it's my understanding that if my heart ceases to beat then my organs become unsuitable for donation at that point, meaning I can't be an organ donor.

@TreeSmuggler

Yes its a bit silly. It seems to stem from subconsciously wanting to believe that your body (and therefore "you") will still be the same after death, as if you are asleep. Of course it won't be, you'll be burned or rotting within days and "you" are gone anyway. This is hard to accept or even really understand for humans, even though we know rationally that is what happens.

OP if your main concern is that he won't follow your instructions after death, well keep in mind you don't have to follow his, on the minuscule chance you end up in this position.

Its a 'bit silly' to believe in God (which ever variety of God suits you) but for the most part we respect that still.

In terms of life and death people have all sorts of beliefs - its an emotional thing not a logical thing. Humans operate on both emotional and logical levels because thats our nature. We have this need in our lives sometimes to process the unfair and things we have no control over or what we don't understand.

As a rule we will fight harder for emotional beliefs rather than logical knowledge because our brains are programmed that way.

Sometimes our beliefs make no sense what so ever. But they are incredibly important to us and our sense of self and worth.

Anxiety and fear are part of this as beliefs are part of our self preservation mechanism system. You cannot reason with them a lot of the time.

Ironically a lot of the 'you are selfish' responses here are part of the belief system rather than being a logical response. (And I'd argue selfish in their own way including in the sentiment from which they originate). The emotive language is the dead give away. Others are calmer and more rational and fair enough.

If people believe their body is sacred in some way, it helps them deal with death and accept it. For some they get comfort from the idea of donation (ironically few people are suitable candidates for it) for others its something deeply distressing.

We wouldn't shout at someone in distress for doing some 'selfish' immediately after their life partner or child had died, so why is it ok to shout it at someone in this context?

If you want to argue on this drop the emotional blackmail, be rational and respectful and calmly make you point. Otherwise all you do is entrench anyway because of which part of our brain this decision is formed in - the emotional part. Attacking it only provokes an defensive reaction and doesn't change minds.

I am quite poorly, so donating anything would probably not be allowed but if i were fit enough unless I knew before hand where it would go (obviously impossible) I would not want to do this.

YANBU. I said exactly the same thing to my mum when she made the effort to ring up and take herself off the organ donation register. I think if you’re willing to receive you should be willing to give. It can’t be a one way street.

It can’t be a one way street.

Of course it can. How could you even enforce that anyway?

@YouTubeAddict

YANBU. I said exactly the same thing to my mum when she made the effort to ring up and take herself off the organ donation register. I think if you’re willing to receive you should be willing to give. It can’t be a one way street.

So by that logic we bump the rich to the front of the NHS waiting lists, since they give the most through tax. Those who don't work to the back of the queue. They don't give anything.

No?

How about we bump certain professions to the front of the list, those we deem more worthy than others?

What about if they volunteer or donate money to charity?

See how ridiculous this is?

The NHS treats on the basis of medical need and on nothing else. I don't care if someone is on the organ donation register or if they chose to work as an investment banker instead of a nurse or if they don't give money to charity even though they're rich.

If they need the organ the most out of all those on the list, then they are the one who gets it. No arguing over who is most virtuous and worthy.

YABU

I put myself on the organ donor register for certain organs. I dont feel comfortable putting my child's up there (in response to your hypothetical about your child's heart in the OP).

It's not my body to give and I don't like the idea of my child's body being stripped. Maybe I'll change my mind n the future. It's just morbid to even consider your child being in that position (dead).

So organ donation is a great thing, you have to understand why people aren't comfortable with it. Plus, most donors won't be used anyway, so most times it makes little difference whether they opt in or out

My OH suffered form kidney failure and was on dialysis for many, many years. I offered to be a living donor but as I was going through tests she benefitted from a donated kidney. This was a few years ago. It was life-changing, in more ways than one, and we will be eternally grateful to the family who permitted their loss to help others.

I wish there was a way that there was a legal document that confirmed what the deceased wanted done with their remains after death.

I have been an organ donor since I was old enough to do so. blood donor for any, many years. I would feel it went against my wishes if it was the responsibility of a 'non-consenter' to say if my wishes were adhered to or not.

And vice-versa if any non-consenters wishes were to be decided on by a person wanting to donate.

I have no problem with people who do not wish to donate, be it religion, fear, choice or other factors. Their body, their choice. I do not agree with people who would either allow or disallow donation based on their wants rather than the person who died.

@LateDecemberBackInLowB12

The shaming on this thread is awful.

I donated my sons organs many years ago now.

It was a gift, a gift that I chose to give. Had it been expected, or if people had called me selfish and started on about other families and using emotional blackmail I may not have been able to donate them.

It shouldn't be expected. It's not selfish not to put your family through the process, which is bloody hard IMHO.

Its selfless to donate, it isn't selfish not to.

We need to think of our families and what's best for them, as we do with wills, we don't call people selfish for letting our families have our belongings and not leaving it all to charity. Our bodies are the same,whatever makes our families happier and more comfortable is paramount.

This is well explained.

What's ironic is that this "oh no, I am probably just kind and not selfish person" is anything but kind

@Babdoc

My DH died at 36. We donated his heart, kidneys and corneas. His heart saved a 21 year old who was dying of a congenital heart malformation. I still grieve DH thirty years later, but there is a small crumb of comfort that we followed his wishes and helped another family to avoid the pain that we suffered. I am a Christian, and don’t see any conflict of interest between religion and organ donation. Christ gave his whole body for our salvation- how can it be wrong for us to offer parts of ours?

What a lovely post.