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?

Oops, typo. 'His cancer drugs meant.....' .

I dont understand why someone would over rule it. For me it would give me comfort to know that although the person I love is dead, another family (or several families) are not going through that grief because of my loved ones organs.

It would make a desperately sad time easier to cope with.

I had this conversation with my husband this morning. Didn't the article say that 1200 people missed out on organs since 2010 because of people going against their loved one's wishes.

I can't imagine how difficult it is to lose a loved one and be faced with this but I also think of what would happen if my daughter needed an organ and how heart breaking that would be. If I won the lottery so could afford to take time off work and help with childcare I would also consider being a kidney donor.

I dont understand why someone would over rule it.

DS would find it very difficult not to overrule my/my dh's wishes. He witnessed the donation preparation (staff discussing which organs etc and how to convince the family to agree etc) carried out in the most unsympathetic and unprofessional way possible. His view to this day is that his bio parents were treated with less respect than a car at a scrap yard - I can't disagree with him and we did make a formal complaint about how we were treated - and he would find it hard to the point of traumatic to take that chance with us but he would try.

Our choice to honour his parents wishes have made his grief far harder to manage and work through, it has brought him pain...no comfort at all!

I wonder how many families would override if you linked your wishes to their inheritance? Do as I ask or all the money goes to charity.
Thankfully DH & I are on the same page about these things and so are our immediate families. DHs grandfather donated his body to science last year and when granny does she wishes to do the same. We had a memorial dinner instead of a funeral and the university had a service for all the families that had done this.

I think the fairest way is to have a system when you can state your wish either way, but then it cannot be overruled. So if you opt in to be a donor, that wish should be honoured - same if you opt out of being a donor. If you haven't declared an opinion either way, then the decision should fall to your next of kin.

Is the problem that NOK can say no when someone has said yes?

If so then that obviously needs to be stopped.

I wonder how many people who aren't registered as donors simply haven't got around to it?

I also wonder if some who aren't bothered will opt out purely for the sake of not being forced into it?

My father donated his body to medical science. He told us as soon as he was diagnosed with Parkinson's. When he finally died, my mother still asked all three of us if we were happy with his decision. We were. His memorial service (no funeral with no body) was a wonderful celebration of what a great and generous man he was.

I donated my husband's organs when he died last February. We had talked about it so I knew he was on the donor register and there's no way I would have refused permission.
I was horrified to find out that so many families go against their loved one's wishes so I have been doing a bit of campaigning about it since. I've done a number of newspaper and magazine interviews. The latest was in the Unison (union) magazine if anyone saw it.

I don't agree OP.

We should all let our relatives know what our wishes are but what happens after we've died (or reached a point where we cannot recover) is not up to us. We don't have to live with the grief. Our loved ones do. I believe in organ donation. I would want to help people. I help people all day at work. However what is most important to me is not the impact on people I don't know. If they lose me I want my kids and dh and parents to feel complete so they can grieve properly. That's my priority. I would walk over hot coals for them, I certainly don't want a decision I've made to shadow the rest of their lives. I suspect dh would be very pro organ donation but who knows how somebody would actually feel.

I also think there is a certain level of ignorance about organ donation. Frequently people talking about 'lives being saved'. Well yes some organs go to people who are at risk of death in the next few days. But there's a down side too. Some donated organs will never work. Some recipients may end up with complications 'worse' than their state pre operation. A large number of donated organs will fail, some very quickly. If you donate your loved one's organs you are probably not giving somebody an untroubled life. You may well be improving somebody's health and life expectancy enormously but organ donation is a treatment NOT a cure.

With respect, Northenlurker I think you are the one who does not understand organ donation. I think you are completely wrong to suggest that the possibility of a donated organ failing is a reason not to bother at all and I suspect that you actually have no idea how many organs fail.

Also, it not just about preventing death, it is as much about improving the quality of the recipients' lives. Again, that doesn't mean we shouldn't bother.

I feel very strongly about this. Organs are no use to a body that has died or is about to die, or to a grieving family.

It's about saving lives - donor organs are truly the difference between life and death, and people die on the waiting list.

People die while waiting and waiting for the call to say an organ is available - and families who could do a good and selfless thing, choose not to. Saying no doesn't bring their loved one back. I will never, ever understand it.

I understand what you are saying NorthernLurker but my priority would be to follow the final wishes of my loved one. I wouldn't want to feel I had failed to do something she was so passionate about.
~If I died, honestly? If my dc were still fairly young I could understand them struggling with the decision but if they were older then yes I would hope they would follow my wishes just like I would for them if the worst happened.
i guess this thread shows how hard it is for everyone and there is no easy answer.

NorthernLurker, lives absolutely can be saved - or improved, which is also absolutely worthwhile. There are young people I know with cystic fibrosis who would have died without lung transplants, and who are now doing brilliantly. I know others who died on the waiting list, hoping til the end that lungs would be offered. Which is tragic.

I totally agree, the dead person's wishes should be respected. Surely it would help the grieving process knowing, that you carried out such and such, and your loved one would be happy.

DH had a kidney transplant 30 years ago, he wouldn't still be here and the DCs certainly wouldn't exist it wasn't for someone's selfless decision at an awful time. I think of his donor's family often.

I agree that it is awful to think that our wishes can be overturned.

Like others I simply don't understand why anyone would refuse.

What possible difference does it make whether a body is buried missing an organ? And if the deceased is going to be cremated is even more ridiculous.

How does this aid grief?

Why could they not change it so that when people register their next of kin has to sign a box to say they will not prevent the transplant, which would be binding. Then if the person who wants to donate is being prevented from doing so they can argue it out with their next of kin to make sure that they are only donating when both parties agree to it, otherwise it would be over ruled anyway after they die so what a waste.

I would definitely take an organ of I needed it so why on earth would I not donate? Anyone I am next of kin for, I would give permission for their organs to be used. I have thought about it at great length so the question wouldn't come as a bolt out of the blue. I agree with an opt out system and do not think relatives should be able to refuse if the deceased had wanted to be an organ donor.

There's a lot of talk about the emotions and grief of the family of the potential donor, and the wish to minimise their suffering. Not a lot of talk about the suffering of the families of the 600 people who die each year on the UK waiting list.

Despite feeling strongly about it I can understand why people refuse as such a traumatic, emotionally charged time.

All the more reason why the previous calm, rational decision of the potential donor should take precedence.

I have experience of both working as part of a transplant team, an organ retrieval team and as being the daughter of someone who had a catastrophic brain injury, but whose family overruled that person's wish to donate their organs.
The truth is, until you are in a situation where you actually have to consider donating a loved ones organs, you can't imagine what a horrifying and overwhelming thing it seems. You don't have very long to make the decision and you must do it at a time when you are coming to terms with losing your loved one.
It's been ten years since I made that decision and I don't regret it. Even though I've been involved with transplantation professionally. Instead, I regret not having talked about it when my parent was alive. If I had known more about it at the time and what would happen, it may not have been such a horrifying prospect.
I am on the organ donation register, but I completely understand it might be too difficult for my family to deal with and thats ok too.

That last message seems harsh, but actually I think taking the decision away from families of potential donors as much as possible can be in their emotional interests as well, both in the long and short term, and yes I agree that better communication all round can only help.

Agree with ShirleyBassey.

I think a better system might be that families aren't allowed to over-rule the wishes of people who had signed up to the register. For those who haven't signed up, their families should get to make the decision.