Opting out of organ donation

[ringme]

So the law has changed and this spring the NHS will consider you to be an organ donor automatically if you don’t opt out. I haven’t had a chance to really consider this all yet, WIBU to opt out at this stage until I have time to think about it or is that a selfish move given that 408 people died last year waiting for a donor?

What will you be doing?

www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/faq/what-is-the-opt-out-system

So much misinformation I could weep. I am a doctor, I have cared for patients whose organs have been donated and those who have received an organ.

Families will still be asked to give consent even in the opt out system. Families can still override this.

You don’t die alone, you are with a team of individuals who take care of you in your last moments. I have stroked the hair of those patients as they die. To say they are alone is insulting.

Organ donations happen from heart beating donors (i.e. those whose are “brain dead”) and from non-heart beating donors. To be declared brain dead - there are a serious of complicated tests carried out by two highly qualified doctors under very strict conditions. We work so closely with organ donation nurses (who are incredible) and with families and we take the upmost care when we do this.

Organ donation saves and transforms lives. I remember each patient who has donated vividly and they have given the most amazing gift.

Those worried out eyes being donated - it is the cornea not the whole eye. It can provide sight back to someone and that is truly amazing.

I please urge everyone to let their loved ones know of their wishes. Organ donation is a truly wonderful thing and I am proud to have been a tiny part of this.

So lovely to hear from you @misdee. I hope your family continue to thrive and how wonderful you have gone on to have more children.

So much misinformation I could weep.

There is also a lot of correct information on the thread .

Being a doctor doesn't make your perspective more valid that than of families and potential donors.

Thanks for this thread.

I've just signed up some of my organs. But for some reason I just can't say yes to my eyes and heart being donated. Not religious but feel these are linked to my soul.

@Teateaandmoretea

Where did I say that? Actually what I did was give some accurate information about the process as a doctor who has been involved. I am also a potential donor and my family and I have all discussed organ donation and our wishes. There is a lot of misinformation out there and I think it is vital that we tackle it head on and explain the processes involved.

countbackfromten thank you for your very helpful comments.

In the original quote that is in bold.

As someone who has consented as a family member I feel that actually a hell of a lot is hidden and people have no idea what they are signing up to.

Your post is factually accurate but misses parts out that are really relevant when you are in shock and it's a member of your family namely:

• you will be asked questions that you don't know how to answer. Eg do you want your relative to be revived if their heart stops purely to donate their kidneys
• relatives are asked intrusive questions
• people are kept alive for significant time while they match organs (18 hours in our case)
• after all this organs may not be transplantable anyway so it all may be a waste of everyone's time. Particularly if a non heart beating donor takes too long to die.
• not everyone finds it a wonderful fluffy comfort as per the propaganda.

But where I totally agree with you is the key thing is you need to be certain what your relative wants. That is where we were 'lucky'. My father thinks that DM would have been less keen if she'd have known what it put me and my brother through. I also agree the nurses were amazing. What a job 😱.

At the moment in the UK, there is a limb transplant programme, but face and uterus transplant programmes have not yet been introduced.

At the moment. Yet. These are not reassuring words and phrases. I need to here never, under no circumstances, this will be completely banned by law.

The current system of ‘opting in’ to donate does not cover rare or novel transplants such as limb, face or uterus donation. A person’s family would have to give explicit permission before their loved one’s limb, face or uterus could be donated.

Again, this does not offer the absolute guarantee I want that my womb will under no circumstances be up for debate. At all. Ever.

It is the government’s intention to maintain the status quo for novel transplants, so express consent is required for donation of that organ or tissue to go ahead.

Intention. Another weasel word that offers no guarantee.

It has always been the government’s intention that the opt out system will only include routine transplants.”

Yet more intentions with no force of law behind them.

I am less reassured than I was to start with.

countbackfromten perhaps you can explain the anticipated available organs number difference between the opt in (where family get the final say if the deceased hasn't explicitly opted in or out) and opt out (where family also get the final say if the deceased hasn't explicitly opted in or out)?

Because, as the transplant surgeon I quoted upthread says, the opt out system REDUCES the pool of potential donors because significant numbers are appalled by presumed consent and remove themselves from the register entirely.

I don't understand the rationale behind the assumption that the unknown status potential donors will now yield more organs.
They were always part of the pool of potential donors even in the opt-in system. And their families were always consulted.

I've been reading this evening that families are much more likely to approve if there is hard evidence that their relative proactively opted in, than if they never did and an assumption was made.

The problem now is that there will be no evidence (I think) that anyone on the register ever made a proactive, explicit decision.
We may not ever know now how certain our loved ones were about their donation.

We may not ever know now how certain our loved ones were about their donation.

^^this is what I think too and ultimately it's by far the most important thing when you are in that position.

No problem for me in organ donation, the same for my children if god forbid anything ever happened to them. If none of my organs could be used or anything unusable left I would be quite happy for it to be used for research. If that is possible

@Barracker we honestly don’t know what will happen until the system changes but can look at evidence from other countries with an opt out system.

For me it is a step forward but far more important is demystifying what happens in organ donation and raising awareness of it. We need more people to be having the conversation and telling their families what their wishes are. Relatively few people die in a way which allows donation to even be thought about.

The work of specialist organ donation nurses (SNODs) cannot be overlooked. I have worked with many over my career so far and they have uniformly been amazing - supporting families through the process and changing lives.

And to anyone who has had personal experience of donation or is now thinking about it - thank you. Seeing a heart beat in a patient for the first time or a kidney start to produce urine is a truly awe inspiring thing and it really is the most wonderful gift to another person and their family.

Lord McColl in his speech said similar; the biggest difference by far comes from funding and training specialist nurses.
He made the point that opt out systems are often introduced alongside measures such as increased awareness advertising around discussing your wishes with family, and investment in nurses, and is concerned that the huge impact those initiatives have often masks the actual detrimental impact opt-out systems cause by reducing confidence, trust, and ultimately the donor pool.

One of his points was the importance of stratifying the different impacts of various measures in a 5 year review of the law, so that it can be established whether opt out does in fact increase donated organ numbers, or whether it actually decreases them, as has potentially been observed in some other countries.

It's no use to me, once I'm dead. If it's any use to anyone else, they can have it.

I’ve just gone onto the nhs website and opted out as I didn’t know about this policy change. It’s been kept quite quiet, presumably so most people become potential donors without realising.

I have some undiagnosed illness, makes me feel really awful at times and I have some odd symptoms - may be fibro or mild MS but not diagnosable as all tests clear so have been discharged as “no diagnosis”. I have no idea if it’s transmittable, so don’t give blood either even though I have a sought after blood type.

I couldn’t consent to donate, would feel terrible about solving one persons illness only to lumber them with a different one. Yet my medical records would probably be accepted as fine, as I don’t have any of the official “banned” diagnoses.

It is strange, because, if anything this thread has made me really consider if I should now opt out (having previously been opted in) At the very least I am going to consider what I will opt into. There has been very little considered argument as to why an opt out system is better.

WeSleek I would never, ever agree to my reproductive organs, limbs or face being donated (I won't donate tissue under the current system) and I worry that it will be introduced without notification.

There needs to be much better communication, guarantees that no organs will be added without notification would be a start.

I have opted out. I don't want my organs being kept healthy as a background thought in any doctors mind if they are trying to save me, or at least keep me comfortable in death.

I also don't want any part of my reproductive organs being used. Once we are all used to people being kept alive for their lifesaving capabilities, why not keep that young, healthy (but 'brain dead') woman alive and harvest her eggs?? And then, why not just use the healthy uterus to grow babies in?? She's dead, after all??

We may not ever know now how certain our loved ones were about their donation

^this is what I think too and ultimately it's by far the most important thing when you are in that position

So you'd challenge their Will?

I've been a donor since I was 18. I won't need them once I'm gone and I'd rather they went to someone who needs them rather tham just getting cremated with the rest of me. I think it's great that everyone will be considered a donor unless they opt out.

The doctor's useful comments above however do not change my view - I wqas an active opted in organ donor until this law change which takes power from the individual and gives it to the state. That for me is the tipping point and why I have opted out. It is an abuse of state power.

As someone says above there are too many mights and at present. They may well change the rules yet again and what we think would never happen might. Had they left the law alone they might find they had more donors.

May be they could offer better incentives. Currently my London borough will bury no one in a normal grave with upright head stone (unless muslim or Greek orthodox) due to space space issues. So I will have to be transported a fair way and double the charge paid. If opting into the donor register came with it a legal obligatin to ensure I could be buried in a graveyard within 2 miles of my house with a full grave and grave stone and perhaps a right to buy a burial plot there too for the family I might reconsider my opt out..

My organs, limbs etc are absolutely no use to me when I’m dead, if I die in circumstances that enabled any part of me to be donated they are more than welcome to take it.

A very close friend died two years ago, as he was in ICU he could be a donor. His husband was later informed that his death enabled four people to receive organs and at the time of the letter they had all been a success. It’s been a huge comfort to him knowing that something positive came out of his death. If you choose you can find out what has been used, whether it’s a transplant or research, the age range of the person and if the transplant was a success. You find out within 15 days of them passing away.

The idea that a young person's death is a positive in any way is utterly chilling. This type of value judgement loads the deck for those left behind after a young person dies. The presumption is that the family must be comforted that their loved one was able to be a donor, that their grief is in some way attenuated, 'at least' 'something good came of it' and the like. At least one person, whose mother donated, has stated this isn't universally true. And whilst it is for some, this pervasive mentality does indeed lead to the idea that death negates any personal value of your corpse, even to your own relatives; hence, if you don't give it away, you are selfish, immoral, and far worse.

I remember once watching a piece on a local TV news bulletin about a child who was extremely ill and desperately needed a heart transplant.
They showed a member of the hospital staff ( can't remember what her actual role or job title was) reading a statement outside of the hospital appealing for a donor heart.
I could not believe my ears when she said that one of the problems was that improvement in car safety meant that there had been a reduction in suitable donors.

The idea that a young person's death is a positive in any way is utterly chilling. This type of value judgement loads the deck for those left behind after a young person dies. The presumption is that the familymustbe comforted that their loved one was able to be a donor, that their grief is in some way attenuated, 'at least' 'something good came of it' and the like.

I totally agree. I donated one of my childs organs, when my other child died I was unable to do so.

I feel the same grief for them both, i didnt feel any comfort at all knowing my son is 'living on' (or whatever spin people put on it).

I had no desire to meet the recipients, I know how many there were but have never opened the letter I got about it.

I hate all these emotional videos on Facebook where people are listening to 'their childs' heart, or 'their dad' is walking them down the aisle etc.

I also hate the fact that when I did used to talk about it my sons death was deemed 'worthy' because his organs were donated, whereas my daughter felt like a nothing.

It's a lot of pressure to put on someone to feel happy about their child dying because someone else's didnt.

Honestly, given half a chance I would have chosen my children to live over and above anyone else. I just didnt get the choice, so I am utterly selfish when it comes to it anyway.

My children are dead, that's that, no amount of anything will ever make it better.