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

I've been an organ donor since the 80s, apart from my eyes, eyes are not needed to save a life. I know they could be life changing for someone but that is my personal choice.

However I feel very uneasy about the new opt out procedure. Your body is the only thing you truly own and I think there is something very wrong with the state harvesting your body parts if you haven't opted out.

I opted out, main reason being they don't wait until you're dead before they start harvesting your (living) body.

A poster upthread said families should not be able to say no to donation if someone is on the donor register. If that were to become the case then I think that automatic opt in would be wrong. What if someone didn't realise they were automatically opted in and the family were aware they didn't want to donate? No doubt some on here will say it doesn't matter but that's a dangerous path.

I haven't seen anything about automatic opt in anywhere apart from on MN so I can believe that many people don't actually know. I saw my GP yesterday and while there were posters everywhere about the flu jab there was nothing about this.

The flaw in the argument that if you wouldn’t be prepared to donate an organ then you shouldn’t be allowed to receive one is that both scenarios are hypothetical at the time of decision.

People blithely say “I’m an organ donor” when reality is that no you’re not. if you die in the right circumstances, and only about 1% of those who die do so, then your organs could be donated if you or your next of kin consent. However none of us actually believe that this will happen. We make those statements in life, and one of the reasons why the family are so often unaware is because people don’t believe it will happen to them and think that it would be ok to talk about it tomorrow except that for some that tomorrow never comes. But we none of us think that it will be us or a loved one.

Conversely no-one actually expects to be told that they will need an organ transplant. Again we talk about “If I were ever to need an organ” but again, we don’t think that we ever will. So when you are told that you will need a transplant it’s something you hadn’t bargained for, in the same way you likely hadn’t bargained for the fact you could donate your organs in the right circumstances.

And even the fact of donation is broadly hypothetical. If we start to deny organs to people if they wouldn’t donate then you’re denying treatment to someone who would never likely have been in a position to donate anyway, since you’re far more likely to be a recipient than a donor.

As for the vitriol being thrown at people for saying that they wouldn’t donate their or their loved ones’ organs, would you shout that in the face of a recently bereaved mother who didn’t agree to donate her baby’s organs? Or would you direct that vitriol at the children of someone who didn’t donate their organs?

While I do think that some thought can be given to the fact that in the event you need an organ someone will need to donate one, heaping hatred and vitriol on those who feel differently to you achieves nothing.

@yorkshirebloke1 Yes I've opted out as the decision on whether my organs are donated is one that should be made solely by me.

My family know what I expect them to say however. Whether that is a yes or no is entirely my own business.

As for your question - no I probably wouldn't having seen my lovely neighbour say he wished he never had his kidney transplant. He went from coping well with home based dialysis to an endless series of hospital admissions, infections and complications that led to a horrible death from sepsis less than a year later. All directly attributable to the transplant.

I also lost a friend after 2 failed transplants.

Organ donation is no guarantee of a better life for the recipient although I don't recall that being mentioned anywhere in this thread

It's an interesting debate and whilst I have opted in I think people must have the right to opt out and in an easy way to do so.

But I am struggling with the issue for opting out because they don't want the state to own their body. Actually in terms of either the opting in or opting out policy for me it's actually the next of kin that owns my body as they get the final say no matter what you have requested. This is why it's very important that the people that will have a say know your wishes and more importantly you trust to act on your wishes.

@echt no, you're wrong. The argument comes under the section "historical background" heading. It isn't about religion it's about what they considered as "brain dead" when they labelled it so.

If you really don't want to donate your organs to save someone else, then simply opt out - but keep your ignorant comments to yourself in the meantime.

It isn't always as straight forward as 'simply opt out'.

There are organs I'd be prepared to donate and others I am not. At present the ones I am absolutely not prepared to donate (reproductive ones) do not come with a specific opt out so I have no choice but to opt out of all.

Unless and until there is either a specific opt out for reproductive organs or a law banning any possibility of transplanting or experimenting with reproductive organs I'm out.

While it's easy to say you don't need your organs after death, the body needs to be kept on some form of life support to be useful for most transplants. Brain death is the criteria.

Many people don't trust that mistakes can't be made about brain death diagnosis. Many people also don't believe you're dead until you're cold and dead. A beating heart donor is nothing like the dead body you view in a funeral home. They will be warm, skin will have colour. On a primative level relatives will find it hard to accept they're actually dead. You are asking someone to watch their warm, lifelike child be wheeled into an operating theatre to have vital organs removed. If it's a result of an accident, the family will be in deep shock. It's a hard ask. I'm not surprised many people refuse. If you think about what it would be like, it's brutal. I don't think less of anyone who couldn't do it.

Organ donation is no guarantee of a better life for the recipient although I don't recall that being mentioned anywhere in this thread of course not. Because organ donation is always talked about as giving someone the chance of a better life.

Every procedure comes with risk and it’s a fact that around 10% of recipients will die during or just after surgery. Similarly some will die in the first year, but more survive and go on to lead normal lives than don’t. And the truth is that without organ donation all of those people would die.

There are no guarantees to any procedure. Any operation carries a risk but when benefit outweighs that risk we take those chances.

Told my parents when I was a teen I wanted to donate my organs if I died.

Signed up to the register as soon as I could.

I can't give blood as I've received blood.

I see no reason why anyone would opt out.

And organ donation quite often isn't life saving. It's life prolonging. Many organs fail within a few years. The immune suppressing drugs have side effects including a greater susceptibility to cancer. You are unlikely to give someone a normal lifespan with an organ donation.

Some people may think the sacrifice of the family of the donor isn't worth the uncertain gain of the recipient. That's their choice.

It's interesting that many people are squeamish about taking corneas. These are one of the body parts that you can take after the donor is cold and dead and one that is likely to last the longest in the recipient. It could be classed as maximum result for minimum sacrifice, but even people willing to donate other body parts are often reluctant, showing we are all illogical in some respects. If even willing donors are this illogical how can we pour scorn on others who choose not to opt in?

It’s fine to say no if you also say no if you won’t accept an organ yourself.

Sorry my post is unreadable! I meant you should then say no to an organ donated to yourself.

@ Missillusioned IVF increases the risk of cancer as well as the risk of the baby being born with SN. Do we advise against that?

If someone is told their only chance of a long term future is an organ transplant when the life they are living is already limited then they will likely take that chance.

And the transplant consultants are honest about what does and doesn’t carry long term benefit.

I need a heart transplant. However I have in the past had pulmonary hypertension as a result of my condition in which case heart transplant wouldn’t be possible due to the rejection. When I asked if a heart and lung transplant was a consideration he said that it could be, in extreme circumstances however a heart is the best bet because heart lung transplants have a bad prognosis.

There are mn’ers whose family have had transplants and whose lives are improved by them. @misdee was a regular mn’er whose dh had a transplant some years ago, and while I have no idea what his condition is like now I do know that he was very close to death at the time and was on the urgent list, and that afterwards he was able to go back to work and they had about four more kids than the three they’d already had.

Somehow I don’t think she’d be saying that she wished he’d never had it done...

With regard to the comment upthread about removing organs before the person has died, the person is technically already dead, something confirmed by a fairly lengthy procedure involving 2 medical consultants. If they were removed from the ventilator they wouldn't breathe because their brain stem is no longer functioning and their heart would stop beating very shortly after. Patients look relatively well because they are oxygenated by the ventilator so that's why it's incredibly difficult for relatives to accept that their family member is technically already dead. It is true that hearing can be the last sense to go when a patient is dying - that's why relatives are always encouraged to talk to their family members during the process - but when someone is brain stem dead technically they cannot hear because there is irreversible absence of brain activity
With non heart-beating donation the patient has to die within 3 hours of treatment being withdrawn; the team will be there ready waiting but if the criteria isn't met they cannot proceed. Some organs deteriorate quickly so if the patients hasn't died within an hour or so kidneys/heart cannot be used. In these cases the patient is already close to death and deeply unconscious.

I've opted in. If my organs could benefit someone else after I have died then that's fine with me

Both me and DH are more than happy for our organs to be taken - hell they can take anything from us that they can use: skin (used for burns victims etc), eyes, womb, bowel. Anything. It's no use to me when I'm dead.

Those asking about Medical professionals not doing everything to save you - of course they will. If you die (as in heart stops) your organs are no use anyway. You need the heart beating to pump blood around to keep the organs alive.
Opting in only means you are happy for your organs to be used - your family still have the option to say no but knowing your wishes can make a very difficult conversation slightly easier. It was opt-in for years but so many people 'never got round to it' and potential organ donations were wasted.

PP said about people meaning to opt-out and then getting hit by a bus - same could be said the other way round. Joe Bloggs keeps meaning to sign up but never gets round to it and is hit by a bus. His family do not know his wishes and so say no - his organs could have potentially saved at least 7 people. If they had known his wishes then yes they may still have said no but they may have also said yes.

@WeeSleekitTimerousMoosey

When you sign up (opt in) there’s a section where you can select the organs you are prepared to donate. You can choose to only donate your heart, for example, and nothing else.

Here’s the link to the website, which has lots of information and facts surrounding organ donation. There are lots of misconceptions, myths and incorrect information on this thread.

www.organdonation.nhs.uk/

For the record, although I am passionately for organ donation I’m not in the “if you don’t, you shouldn’t get” camp. I’m also passionate about fairness and it being based on medical need. And whilst I respect that there is an opt out option (because there has to be), I do not respect those that do opt out, because there is no logical reason to do so in my opinion. To me it is the ultimate act of selfishness.

Seeing as I have been mentioned....

Dh is still alive. I wish I could say 'and well' but he has just come out of hospital again after contracting influenza A over the xmas period.

He contacted a virus when he was 22 which attacked his heart, causing dilated cardiomyopathy. He was stable for a few years and then went into heart failure when he was 25. He was listed for transplant, had an ICD fitted to shock his heart back into rhythm. It went off several times. He was part of a medical trial for artificial hearts (he has a thoratex TLC-2 LVAD, the devices these days are much smaller). He had 3 strokes whilst waiting for transplant, and eventually received a heart 2.5 years after being listed.he spent the majority of those years as a inpatient at harefield hospital.

Since transplant he returned to work, until his health took a downward turn again. We have 4 more lovely children, who are doing extremely well and take things in their stride. Life isnt always easy, and the recent hospital admission did worry me a lot as he was showing signs of rejection as well, but seems it was the flu instead.
He had rejection in 2013, other than that he has been ok.

I'm happy this is going ahead as I would accept a donation, so why not be a donor?

Having seen a work acquaintance with Cystic Fibrosis go from grey in colour, struggling with constant chest infections deteriorating over years then after transplant appearing normal (pink, regular breathing), coming back to work and living a regular life years later, I know transplants can work!

I opted out because I'm uncomfortable with the fact that I can't beforehand stipulate some personal boundaries that I have regarding donation. For instance I want to be able to make a list of people that cannot be a recipient (like convicted peadophiles and murderers) and I have some concerns about the procedure (I still have unanswered questions regarding the danish woman who was declared brain dead and was going to be a donor and then woke up). Plus that death is a process that takes days. Just my heart stopping beating for two minutes doesn't satisfy me as being dead enough to be harvested. There is plenty of evidence that there is still brain function after that.

I still donate blood for medical research and have participated in other medical research regarding medicine. I don't see why people say that I shouldn't be a recipient when necessary just because the system doesn't let me donate via my wishes. I'm not against donating per se, it just has to be on my terms.

Thousands of people are dying while on the waiting list. What reason is there to opt out? Thousands of reasons to be on the donor list.

More than 10 years ago, we decided to donate my mother's kidneys when she unexpectedly passed away. We recently heard from one of the recipients, who survived to see his grandchildren and is doing well, and is still in touch with the other recipient. I also have a family member who is the recipient of a donor organ.

I absolutely accept it is a personal decision, but I see no reason to object. Receiving a donated organ is life saving and life changing.