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?

Snowysky, as Wales is now opt out would you have to opt out completely if you didn’t want to donate everything or can you state that you don’t want to donate tissue for example?

We were approached by a senior nurse to ask if we would consider donating my mother's organs and it did come as a shock, even though the doctor had shown us scans and said that she wouldn't live. It must be a very difficult job for them to do and I certainly couldn't do it. They said they had checked the register but that she hadn't signed up. I guess it's easier to know the person's wishes and I really do encourage people to join the register.

I'm pretty sure that, when you join the register, you can stipulate which parts you do and don't want to donate. I didn't realise that it was only practice that they agreed to relatives wishes if they didn't want their loved one to be a donor. Maybe, if a person is on the register, then relative should not be permitted to overrule it.

I never used to agree with an opt out system, but the situation is so dire, and the number of people who can donate is quite limited (due to the way they die) that I think it's needed.

In the end, as a family, we agreed that my mother could be a donor and she saved the lives of 2 people. We didn't know at the time we made that decision that her wish to be a donor was noted in her will. Please, please make it known to your loved ones if you want to be a donor and also join the register. You could possibly do so much good. We're very proud of what my mother did.

To everyone who said "This is why being on the register is important" ....

Although registering a decision to donate on the NHS Organ Donor Register is a legally valid decision to donate your organs, in practice if your family strongly feel that they cannot support donation, despite staff answering their questions and concerns, donation doesn’t go ahead.
From organdonation.nhs.uk

Which makes it seem that you registering to be an organ donar is pretty pointless if your family are against it.

I think it should be illegal for family to override your decision.

My understanding is that when a family are in a shocked state of, usually a sudden fatal illness or accident and are presented with the imminent loss of their loved one, the staff, no matter how much they might wish to do so, cannot press the family to agree to the donation. Even if the person is registered, if the family disagrees are they really going to remove the organs anyway? I highly doubt it.

So, in short, even if you register and have Use every last square inch of me for the good of others tattooed across your body, the medics’ hands are tied if your family refuse permission. It would involve courts, publicity and Daily Fail sad face photos galore and the organ donation chimes need that like a sick headache. It must absolutely break their hearts though.

Despite there being no legal right for family to override your decisions once you are registered, in practice they can.

How can that be right?

@HollyBayTree

I think you can add being British to that list if you live abroad.

Most countries won't accept blood donations from us because of CJD so I assume organ donation is the same.

And how can those families be so selfish!

Sorry, I'm just so bloody angry. My next of kin (partner) is not an organ donar so I guess I worry my wishes wouldn't be respected.

I will haunt whoever overrides my decision.

What happens if someone said they didn't want their organs donated but all next of kin are very happy to donate? The donor is dead so is their opinion relevant any more?

My mum is totally anti-transplant and always said she'd block my or dad's organs being donated. I got married to help endure she wasn't my NOK; dad has a donor card and lists me on it as NOK.

Dad has told her if she dies, he'll suggest donation. I suspect hospital staff would refuse to get involved, which is a crying shame.

This might be a bit too radical but you could write into your will that should your wishes in this matter be disregarded your property will be left to charity? And obviously make sure your next of kin is fully aware of this.

Let’s hope the need never arises.

Bothersome genuinely curious, if your dm desperately needed a transplant to live, would she just rather say no thanks and prefer to die?

Which makes it seem that you registering to be an organ donar is pretty pointless if your family are against it.

It's why certain conversations, as unpleasant as they may be, are necessary to be held before the worst happens, and not during. Everyone of us in my small family knows (well knew, I'm the last one left) the wishes of each other about what they wanted with regard to DNR orders, organ donation, funerals, burial, etc. If fact, it was because of these discussions that I was able to fight so strongly when my 95yo grandmother had a serious stroke and the hospital were trying to prolong her life (she was unable to move, communicate or eat and there was no possibility of improvement) because I know she had told me many times that she never wanted that, she said she had lived a good life and didn't want to live in that situation. If she had not been so clear with me during her life, I may have been so overwhelmed by the situation (I was 22 and the only family member left) that I may have made a decision that was not what she had wanted.

Have the conversation, be very clear, and make your wishes so ingrained into the heads of your loved ones that they don't have a decision to make when the doctor comes in and says 'have you considered organ donation?'.

I think what makes it hard is in the case of being able to donate means you are alive even if brain dead. Your asking for family members not to be there when the machine is turned off, not spend that last dying moment. Instead asking to take them to theatre harvest and turn the machine off there.

I’m not sure I could do that if faced with the option of being with dh though his last even ventaled breath to say goodbye holding his hand/cuddling him or say bye while his alive knowing once they wheel him away he will then die surrounded by people cutting into him as opossed to by those who loved him.

My aunt wanted to be a donor. When she died my mum was next of kin and decided against organ donation. She wasn’t selfish. My aunt’s traumatised 10 year old was horrified by the idea and got really upset. My aunt wouldn’t have wanted to add to her children’s distress.

We were all with her and her children when the machines were switched off. It’s what they wanted.

metalmum she says she'd turn down a transplant because no-one ever lives more than a couple years with one anyway which is proof they are unnatural, but she's never been much for consistent thought-out opinions...

she says she'd turn down a transplant because no-one ever lives more than a couple years with one anyway

I’ve met kidney transplants older than me, and I’m 39

"We were all with her and her children when the machines were switched off. It’s what they wanted."

Sorry, I disagree. I think your aunt's wishes should have been respected. I personally would think my family very selfish if they did that.

I want to donate to save other people. 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.

I would have been very distressed if my guardian died as a child. But I would have been even more distressed years later when I realised we'd taken away her dying wish!

She was 10. She wanted to be with her mum. She’s never regretted it. Selfish little shit, eh?

With respect too, it’s all very well to talk about what you’d do with a child in that situation in theory when you haven’t lived the reality. It’s bewildering and totally overwhelming and you’d do anything to make it hurt a bit less.

Ah Bothersome perhaps one day she'll have to meet my dm then. Proof transplants do indeed last 25 years or more 😉

You can be head of the organ donation programme, but if your family say no, it overrides any decisions you make pre dying. Unfortunately lots of people say no- although a retrospective follow up done in Glasgow following up relatives 12 months later found that over 80% regretted their no decision but were too upset at the time to consent, regardless of what the deceased relative had wanted. Law needs to change to an all in and opt out system in my opinion.

HollyBushTree organs can in fact be donated by HIV+ people now (successful transplants since 2016 in the U.K.). I have registered and made my wishes known to my DDs and they’re fine with it. One even registered herself. As far as I’m concerned it’s just one of those talks it’s important to have with family members.