Organ donation + families

[alpineibex]

I'm confused about organ donation. I am registered to donate everything but I have seen reports that families have over-ridden the deceased's decision to donate organs, despite them being registered.

I don't understand how?

The official website for organ donation states - "The law says that the decision about whether or not to donate your organs rests first and foremost with you. While your family has no legal right to override your decision, in practice their support is always sought. Specialist nurses will be available to provide information and support, answering any questions or concerns families may have. This will allow families to make an informed decision about donation and support your wishes. That is why it's very important to discuss your decision with your family and make them aware you want to be an organ donor."

Do the bits highlighted conflict? What 'informed decision' are families being asked to make about their next of kin's wish to donate organs, if they have no legal right to interfere?

How are families blocking donations?

I don't understand why you need to tell your family at all, it's your choice, and if they have no legal right to override your decision (supposedly) then why would you need to tell them and make sure they support your decision? Surely their support isn't needed?

My daughter would have to have it explained to her that it was saving other sick people. I like to think she'd look back on it when she'd matured and see it made sense.

We're getting close to 10 years since my ds lost his biological parents, DH and I were NOK for his mum. We have explained why we made the decision to donate her organs (it was her wish and we honored that), but nearly a decade later his nightmares are haunted by what we did. The situation was managed so unprofessionally that several people lost their jobs, but I wonder if the woman who was one of my best friends and my DH's sister would think we made the right choice. Many lives were saved, but it's ds who is without any shadow of a doubt still paying the price.

Explanations haven't helped, therapy hasn't helped, time hasn't helped (at least not yet)...I don't know how to help him!

I don’t understand how families can say no knowing it’s what their loved one wanted.

I suspect that you haven't been in the situation of your loved one being kept alive (and yes she was alive I'm not mistaken look up 'beating heart donors') for 18 hours while they match organs. We had no way of being certain if she could feel pain etc. Having been through it I totally understand tbh and would not judge anyone.

That said I think as a relative it would be easier if you didn't have to consent and it was automatic, to me it felt unnecessary. It would also have been useful to know if she wasnt actually dead if she'd like to be resuscitated just for organ donation because that one really stumped us tbh. I guess though there is a risk fewer people would sign up if they knew fully what was involved and they had to think over and above glib jokes about 'being stuffed into a sofa once they are gone'.

I also think that it was massively helpful knowing for certain to donate organs was what she wanted.

Sorry I meant non beating heart donor or its proper name is donors after circulatory death (DCDs).

Andro- I’m so sorry for what happened to you and your DS. That sounds awful.

Is the other option just not to tell the children that the deceased is donating organs?

Even if it meant keeping my grandmother alive for 18 hours, I would do it. I wouldn't want to betray her like that. She's told me she thinks it's selfish and I don't want to disappoint her. After everything she's done for me in my life, it's the LEAST I could do. My personal feelings during that process are irrelevent.

And yes, I don't think families should be asked consent if you are on the register. At all. What is the point in having the register in the first place if your registration isn't final? Might as well just leave it to the family to decide.

Put bluntly, if organs were taken against the will of the family, even though the donor was adamant that they wanted every last scrap of their body to be used, the number of organs available would fall ('I'm not giving my mum's liver - I read about how they steal them to give to alcoholics because I read it in the Daily Mail.').

And please don't judge anyone who chooses not to allow their loved one's organs to be used at a time when they are in bereaved and in deep shock (organs tend to only be usable after unexpected death).

Equally, if you are on the register please make this clear to your immediate family. Because there is a desperate shortage of organs.

Finally, a million thanks to anyone who has had to make the decision. Those of us with family members who have been given the gift of life will always be grateful. My sister was lucky enough to get 2 organs. This gave her 8 years of life. She met my 4 children. She won a place on the Beijing paramlympic team. And she died waiting for another organ which never came.

If the child wants to be with their parent when the machine is turned off and they die then it’s not possible to just not tell them. The child in our case wasn’t upset by the idea of the organs being taken she was distraught at the idea of not being with her Mum when she died.

You have precious little understanding of bereaved children, alpine. Utterly shocking and shameful that you consider a 10-year-old who lost his mother selfish .

Expatinscotland I don't consider the child selfish at all. It's a child. I consider the adults selfish. I understand that my daughter may want to be with me when the machine is turned off, but my choice is to donate. My daughter wouldn't be selfish, but my partner would be if he went against my wishes.

Is my grandma selfish because she would rather donate than let me spend her final ventilated breaths with her? No.
Would I be selfish if I decided to halt her donation just because I (with an adult understanding of the situation) want to be with her? Yes, I think that would be incredibly selfish of me as I'm putting my emotions over her dying wishes.

And you can say I have little understanding of bereaved children, yet my elder brother died of cancer when I was a child.

I'm talking about the adults, not the children.

My mum chose to put the feelings of two traumatised children, one of whom was only 10, first. I think it’s shocking for someone who has never had that weight of responsibility under such heartbreaking circumstances to judge her for that. My aunt wasn’t on the donor register btw but she’s always had a “I won’t need it when I’m dead” attitude and I know would have been happy for us to donate her organs IF her children had been happy with that. They weren’t happy with that, they were distraught and clinging on to every last second that they had with her. Anyone who could have stood there and overrode their wishes whilst their whole world imploded would have had no business being my aunt’s NOK and would have had zero relationship with them from that moment on. How could you possibly rebuild trust if you had their parent wheeled away to die in an operating theatre against their express wishes?

'I'm talking about the adults, not the children.'

Who will be left with the children, and need to consider them as well, as Andro's scenario demonstrates. But hey, carry on judging people to suit your agenda when you've never been in that situation yourself.

Dumbledore, your family did the right thing. Despite what the OP says, as far as I'm concerned, the welfare of the children was the most important thing here.

Last year I had to tell a doctor that I didn't want him to treat my DM to extend her life (she was unresponsive) as I had POA. Knowing that she was going to die was the worst thing I have ever gone through. I can't imagine how a 10 year old would feel knowing that his/her Mum was only being kept alive so they could donate.

And as for suggesting lying to the child about it, words fail me.

OP, I am a passionate believer in organ donation - given that it gave my sister 8 years of life.

But calling people, who choose not to donate when they are deeply, deeply bereaved, selfish does not help your cause. It's not for nothing that organ donation is called 'the gift of life'. It's a gift, and not a tax.

This is not the case. We sat with my mum when they switched off her ventilator. If memory servres me right it was dependant on when she actually passed away after that as to what organs they could use. We were advised that once she had passed we could have 5 mins with her before they took her to theatre and we could wait to see her after - to be honest we didn't need the 5 mins, she was gone and we had said all we needed to while we were waiting nor did we want to see her after the procedure was completed.

I got a donor card in my local library when I was 6 or 7. My dad had explained about organ donation before this.
I think we should have opt in or opt out system. If you opt out you should not be able to receive an organ.
DH and all my family know, I am confident they would not override my wishes.
I actually can't imagine being with a partner who's not on the register, because it's so far removed from my values.
I've seen a loved one get extra years due to receiving a kidney transplant from a living donor. If more organs were available perhaps desperate people wouldn't find themselves in the position of choosing between donating their organs to their children or siblings, or watching them fade away.

I am sorry for the situations encountered by Andro and Dumbledore. We must remember that when organ donation is a possibility it often means that a tragedy has occurred.

JeNeBaguette, to place any conditions other than medical on transplants is entirely wrong. The only criteria should be medical need. An organ should never be seen as some kind of reward for good behaviour.

And yes, my entire family was on the donor list long before we knew that she would need a new liver.

'she' being my sister.

Matilda

You know, maybe it's a personal thing for me due to my brother. My brother would have been able to donate some things, not all due to the cancer, but my mum chose to prioritise her need to be with him (when he was already gone) over saving other families. And I've always held that against her tbh. But then, my mum is a selfish person, so I'm probably reading selfishness into that act too. Fucking hate her, wish she'd died instead. She was always so wrapped up in her feelings.

I just can't imagine not doing what my grandmother wants, regardless of how I feel. But then, maybe I'm reassured because she's told me "If that ever happens, don't be sentimental over my body, I'm not there anymore."

I don't want to do what my mum did. I don't want to be like her. Something great could have come out of my brother's death, instead it was just a waste.

And my daughter, if that ever happened to her, I wouldn't want her death to be needless and a complete tragedy. Donation would at least mean a part of her lives on in someone else, instead of turning to ashes or decaying away.
My mum should of donated what could have been donated, and it's one thing she will never be forgiven for. No good came of it at all.

Urgh. Sorry.

Bereaved families have vetoed the donation of organs from hundreds of registered donors in the last five years, new figures show – but it won’t be happening for much longer.

NHS Blood and Transplant (NHSBT) data suggests relatives blocked transplants in 547 – or one in seven – cases since 2010.

Now things are going to change. The body says it will no longer seek a family’s formal consent in order to reduce the number of “overrides”, according to the BBC.

Woman given bad news by a doctor
(Katarzyna Bialasiewicz/Thinkstock)
Instead, family members will be given a leaflet which explains consent remains with the deceased, although they can still block donation by providing reasons in writing.

NHSBT estimated the blocked donors would have provided organs for 1,200 of the 6,578 patients on the waiting list for a transplant, while not asking relatives could result in the number donors rising by 9%.

Sally Johnson, director of organ donation and transplantation at NHSBT, told the broadcaster: “We are taking a tougher approach – but also a more honest approach.

Doctor in a hospital setting
(Whitney Curtis/AP/PA)
“My nurses are speaking for the person who has died. People who join the register want and expect to become organ donors. We do not want to let them down.

“We have every sympathy for families – and of course we do not want to make their grief worse. We think this will make what is a hugely distressing day easier for them, by reducing the burden on them.

“The principle that the individual affected is the one who consents applies throughout medicine, and it is not different because someone has died.”

From a 2016 article

Alpine with all due respect you don't know that organ donation would have been the start of something great. The organs may have been harvested and deemed not transplantable or they may have failed quickly. You clearly have a lot of anger about your brother's death and the waste of him not donating his organs. Have you had any bereavement counselling? And I'm so so sorry for your loss