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?

A lot of people who would like to donate aren't registered. The families will also be asked to clarify which particular organs are to be donated.

As far as I'm aware the best thing you can do is continue to be on the register, and make your wishes known to your next of kin and family.

Please shout from the rooftops you want to be a donor! It’s very close to my heart and the more people that know the better! I assume you’re in England? Wales rightly so recently changed it to an opt out scheme. Much better and valuable organs not going to waste!

Your famly can override your wishes. Once dead, your body no longer blongs to you, you cease to exist as a legal entity (sorry)

Could you put it in your will?

This is one of the reasons why having a living will is important.

You have all your wishes written.

You can cover all aspects of medical care like turning off machines in coma situations, organ donation, who you have named as the person making decisions for you (so the person you trust to follow your wishes) etc.

I don't think it a legal document but it means if a disagreement takes place it's clear evidence of what you wanted to happen.

My mother and grandmother have written one, posted it to themselves and given me a copy to keep so it is sealed and dated for the day its needed.

Other than that having a donor card and having a properly frank talk about your wants to anyone who would be in a position to have an opinion. Tell them these are my wants and I expect them to be followed.
Parents
patner/spouse
Children
Siblings
And anyone else you feel should know.

Yes, they do conflict. The process of organ donation isn't something that many people know much about, so when it comes to families deciding to give their support or not, it's often the first time that they have any idea of what will actually happen. Understandably, this sometimes leads to families not giving their support even if they knew their relative was on the register. Their support is needed because they are the ones that have to live with it.

I immediately find a useful link I had regarding the subject, there is quite a long list of reason why organs (and donations to medical science) are rejected, but off the top of my head:

Death through drink/drugs/alcohol/various diseases including cancer, CJD, HIV, Hep etc

Death through trauma - eg where you are particularly mashed up and your internal organs are bruised, damaged, destroyed.

Generally death on a weekend, as hospitals have less staff on duty/call, ditto over holiday periods, Christmas, Easter

Death at home

^^ they are just off the top of my head

Off the back of this thread DP and I have just had a conversation about donation and are both registered and aware of each other's wishes.

Your famly can override your wishes. Once dead, your body no longer blongs to you, you cease to exist as a legal entity (sorry)

Dead bodies don't belong to anyone. So why do relatives wishes trump the deceased ?

OP: I could have written your post. Why waste a single penny on any scheme if it's just advisory ?

I don't think families should be able to override the donors wishes. Its no good putting it in your will, by the time your will is read its too late to donate.

Its no good putting it in your will, by the time your will is read its too late to donate.

Hence the register.

I make a point of re-checking every time I give blood that I am still on the register. You never get anything from them, and you can't check online .

Don't forget you can also donate bone marrow as a live donor - so it's worth signing up for that too.

@ISeeTheLight having it in your will would be utterly pointless. The window in which organs can be taken is tiny, the donor has to basically still be alive but brain dead for them to be taken because the organs deteriorate so quickly. So for example car crash victims who only die once they reach hospital are far more likely to be viable donors than someone found dead at home from a heart attack - it’s too late by then. By the time anyone got to a will there’d be no chance of using them.

Be very loud about it. But in the emergency medical info on your phone. Carry a donor card. Everyone close to me knows they take whatever they like, no questions asked, if it was me.

The scheme is far from a waste of money. Can you imagine how difficult it is for healthcare staff to approach families when they’ve just lost a child/spouse/sibling/parent?

The fact the person is generally young and has died a traumatic or unexpected death doesn’t help.
The card signed by the dead person opens up the conversation. It makes it easier to broach the subject. Most families want to do what their loved one would have wanted so having a card helps that decision.

I’d be in favour of an opt out system because there are far to,few organs available but until then carrying a card and letting your NOK know is the best way forward.
It also helps when families disagree with NOK. A mother might not be able to bear the idea of her beloved son/ daughter being ‘cut open’ for donations; they may feel strongly they want to bury or cremate the entire body. If a spouse knows the wishes, they can make the decision and just tell others in family that it was the deceased wishes and that is being respected.

As I understand it next of kin cannot officially override your wishes but no medical team would go against their wishes as the media backlash of an upset family going to the press would do a lot of harm to donor numbers. It might also add fuel to the people who think things like the hospital are so desperate for organs they won't resuscitate you or give you decent care just to get your organs.

I have received an organ after waiting 4 years, I cannot express my gratitude to the family who made the brave and amazing decision to allow their loved one to donate.

I am on the donor register and will donate what I can once I am dead or donate to medical research. Things have changed so much that pretty much anyone can donate to some degree, corneas, tissue etc.
Even organs from people who have HIV, have had cancer or are elderly (so-called marginal organs) which were previously not used are now being used to a greater extent.

Although I am pro donation I firmly believe that it is a gift that should be freely given, if you don't want to donate I have no problem with that, it is entirely up to you. What does upset me is people who have not looked into the facts objecting because of silly fictitious reasons (such as medical teams will let you die for your organs) when they are not agains donation in principle.

And finally(!) if you do choose to sign up to donate PLEASE discuss it with your family, they should be aware of your wishes and by making them aware you may be able to save them some of the trauma and heartache of making a rushed decision should the worst happen.

As I understand it next of kin cannot officially override your wishes

so why ask ?

And finally(!) if you do choose to sign up to donate PLEASE discuss it with your family, they should be aware of your wishes and by making them aware you may be able to save them some of the trauma and heartache of making a rushed decision should the worst happen.

Done, done, and done again. DW too, but sadly unlikely to be used.

So why do relatives wishes trump the deceased ?

The medical teams don't want to make a bad situation worse (although that doesn't always work), so in the face of a devastated, grieving family they will not just remove an 'alive' body and take it to theatre. The relatives are the ones who have to live with what happens and as I know only too well, even when you support the wishes of the deceased the organ donation process can be incredibly traumatic - having been through the process already I don't know if I could do it again even though I agree with organ donation (I hope I would be strong enough but...)

YANBU. It's utterly disgusting that your right to decide what happens to your own body ends when you die and your family (who may not have been close to you or decent people or had your interests at heart or be of the same faith) can override that.

I know dead people don't exactly have rights, other than rules around burials and whatnot. But I genuinely think it's horrifying you can express your wishes so clearly and then have you wish overridden by others. I can't believe it's allowed.

I agree it is ridiculous that a family can override a person's wishes when they have taken the time to clearly state it. Particularly in such a dreadful situation when asking the family to make difficult decisions (which have actually already been decided) is cruel.

I've spoken to my parents about this (as they are my next of kin) and made it very clear that I expect them to donate my organs if the occasion arose. I told them that I would be very angry at the idea of them ignoring my wishes (although obviously I wouldn't be able to do anything about it!).

I think the practise is crazy but until it is fixed everyone needs to ensure that they have that conversation (however difficult it is) with their next of kin.

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

I’m not on the register as I couldn’t work out how to only donate the parts I wanted to (I don’t want to donate skin or tissue) but I have told DH that they can have everything else. I trust him to go agree if it happens.

Hopefully we'll soon be going the same way as Wales and then this shouldn't be an issue anyway. Talk to your relatives, make sure they're on board with your wishes and understand exactly why you want to donate. Educate them and they might realise how valuable organ donation really is.

I’ve just looked at the register and it does now appear that you can select what you want to donate. I don’t understand why they are asking for gender or religion though, that’s none of their business.

I don’t understand why they are asking for gender or religion though, that’s none of their business.

Which is why I never give them. Although I hate the corruption of the concept, "ethnicity" is a thing (I believe) as it may help with rarer tissue types ?

I understood the bit about ethnicity in this case although I never give that information under other circumstances. My gender, religion and ethnicity are my business!

We've had the discussion, also with our children (14 & 18) when they were younger and we all want to donate anything that is viable. We are in wales so obviously it's op our now here.

But we felt before that, it was important that the children had a say in what they wished to happen to them when they died. They both decided that they would like to help someone else, the same as us as parents.

MIL doesn't want to be a donar and dm is donating her body to science. All paper work has been complete for it.