To opt-out of organ donation

[Jamiek80]

I am currently on the organ donor list however if the government make it opt out instead of opt in I will choose to opt out. I have a few reasons firstly though I’m on the register I actually have no clue what is involved, What can be taken, how much is taken, what happens to my body and a whole load more questions. Secondly if opt out what will happen can they just take everything I mean it’s possible to transplant a head these days so why not just store whole bodies just in case? Thirdly would the government make it simple to opt-out? Finally if you start opt out technically the government owns your body post death at what point do they decide they can take your organs while you’re still alive? I’m not against organ donation as I said I’m on the register but perhaps a better approach would be more available information, I wouldn’t even know how to re-register these days!

opt out is sometimes referred to as 'presumed consent'
presumed consent is not consent.

Consent 101: If you have to presume consent, you don't have consent.
We've spent decades repealing the abhorrent principle of 'presumed consent' in marriages, which allowed a man to legally rape his wife because his rights to her body conferred by marriage superceded her wishes at any given time.
we teach our teenagers that if consent isn't volunteered enthusiastically and without coercion or assumption, it isn't consent and may well be rape.
we expect surgeons to inform us of our rights and risks before they undertake an operation on us, and we have the right to refuse, even if others think that decision is wrong.
we would revolt loudly if the government claimed all non-voters might as well be presumed to consent to a default vote for the current majority party, since they hadn't expressed a wish otherwise.

Presumed consent is an appalling principle, EVEN if the hoped for end is good, the means are abhorrent.
And we need more transparency about what else could be done to improve donor rates - the idea that the only thing stopping numbers is pesky people not signing up is not true. There are implications around end of life care and investment in transplant co-ordinators and the time they spend with grieving families that has a huge impact on families giving the go ahead to donation.

If the government changes the status quo from current opt in to a HARD opt out, in other words: the state OWNS the bodies of everyone on life support by default, this is unacceptable. There's a word for when a person owns another person and claims rights over the use of their body regardless of their wishes.

They seem to be proposing only two possible options:

1. You can/will be an organ donor AND Presumed consent will be enshrined as a principle in law
2. You must opt out and you will not be a donor

I am not prepared to accept either of these options.
I am one of the 36% of the population who has bothered to register to donate on my own terms. I've been on the register for years.

I have withdrawn my name from the register as a protest against proposed presumed consent, and I will once again offer myself as a donor when it is just that - offering myself freely, not finding myself property of the state as a default position of all English citizens. There is a real risk that if the government decide to move to a hard opt-out, they will encounter a backlash from existing potential organ donors who object to a principle in law that amounts to "it's yours, but I want it, I'm taking it unless you explicitly stop me in a specific way that I will prescribe and control." A very dangerous precedent.

I favour having a system with opt-in AND opt-out registers. If you do neither, then nothing should be presumed, it's a neutral position, for your family to make a decision.

I think there IS a consent issue with opt in donation, which is that there isn't an official way to refuse consent. You really wholly on your family. If you privately object to donation, but don't ever discuss it with your family, they might well decide to donate your organs. Even if your family know you don't want to donate your organs, they can conveniently choose to not mention that to the healthcare team and consent to donation. I'm sure the latter is very unlikely, but it's theoretically possible. The former scenario I'm sure has happened already.

An opt out system has the strength of giving you a real way to refuse consent

I think an opt in register is also absolutely necessary because it lets people know that you are really in favour of donation - not opting out is not a positive wish to donate, and having an official record of your wish to donate means a lot more than having a lack of opt-out. I'm sure I've read that families are understandably more likely to consent to donation if their loved one is on the register. My family are free to make the final decision, but they deserve to know my wishes (I'm on the register, no intention of coming off it unless forced to by a medical condition).

www.cbsnews.com/news/hospital-errors-lead-to-dead-patient-opening-eyes-during-organ-harvesting/

www.dailymail.co.uk/health/article-2906601/Surgeons-harvesting-organs-deceased-patient-stop-discovering-wasn-t-completely-brain-dead.html

www.telegraph.co.uk/news/health/news/9223408/Miracle-recovery-of-teen-declared-brain-dead-by-four-doctors.html

Organ donation is a gift, not a tax. Anyone can choose not to give, without any negative consequences for them.

And it would be absolutely wrong if transplant priority is given on anything other than medical need. A transplant should never be a reward for good behaviour?

My sister died waiting for an organ. She had already been given two. We will always be grateful to her donors who gave us my sister despite their own loss. But we still accept that people can choose not to donate.

However, any person who opts out because they don't like a new paperwork system is just a bit of a twunt.

And there definitely shouldn't be a question mark after 'transplants should never be a reward for good behaviour.'

I also worry about doctors getting it wrong when someone is not actually dead.

That's the wrong way round. You have to be dead to donate. and they have to check different parameters to check.

catwoozle

I have only clicked on the Telegraph article, what it doesn't say is that none of the tests to see if he was dead had been carried out. The donation procedure had not started. The neurological examination that showed brain activity is one of the tests that would have been done to establish 'death' before donation.

Patients are often the worst people to explain their medical history. One patient known well to the department I worked in was often in the local paper as having, "half a heart", he didn't, but he always said he did and it was reported as fact.

organs can be donated in 3 ways, living donor i.e. Kidney or portion of liver. Non heart beating donation, where patients are not going to live, treatment is stopped and on death donation takes place. There are many strick regulations to this procedure to ensure compassion and best care to all. Thirdly heart beating donation patient is declared Bain dead. There is a large amount of info through search engines. Having been involved in both non heart beating and heart beating donation as well as knowing several people who have had living transplants I truly believe op out is the way to proceed but I also say if you opt out then if you need an organ yourself then maybe you should get one. What on earth is the point of letting your organs be burnt or rot in the ground when they can and do give others a real chance if an improved life. Give children the chance to grow with a parent that would otherwise have died. Let someone see their kids for the first time. I urge everyone to think hard and to discuss their wishes with loved ones because until opt out comes into force loved ones have the final say. Losing a loved way is hard beyond words without having to make this decision

*it should be the case that if you are on the register, that's the end of the story. No relatives overruling the deceased's wishes

I think the reason it is that way is because if push comes to shove and your mother throws herself over your dead body and freaks out, they aren't going to call security in to remove her so they can harvest your organs. It's just a practical thing that I suspect doesn't come up all that often*

I don't know, I thought there was quite a high percentage of families who refuse consent and that was why transplant rates are as low as they are.

It's also worth considering donating your body to medical science. My father died of Parkinsons last year and I wished he'd registered to do this, as you can't do it after death as next of kin. But it might have been quite useful, given his condition and might have helped to advance research.

As I said upthread, my worry with opt out is re people who don't have relatives to advocate for them.

Why would they need relatives to advocate for them if they had opted out?

It should be assumed that if you aren't on the register, you can't receive an organ should you need one.

I'm not allowed to donate - or give blood. Does that mean I shouldn't be allowed one? I'm not sure I believe anyone should be exempt if we take this path.

I do think an informational scheme would be of use now that people are confusing science fiction and real life; but perhaps tied in with the opt out scheme.

I don't think the government wants your dead bodies.

On an opt-out system, you're not giving your body to the government any more than you are on an opt-in system. Either way, you're allowing a few specified organs to benefit someone else after you are brain-dead. It's unlikely you'll ever actually do this, because very few people die in a manner/place or at an age when their organs can be used.

I've signed up for giving-blood. It doesn't mean the government own my blood, or that they can come and get it whenever they like. Use your brains! (which aren't donor organs btw).

Strange

It's more if they hadn't opted out or given the matter any thought, there would be presumed consent.

Whereas with an opt in system, you can be sure that there is proper consent.

Others have made the same point.

Another here who isn't a donor (as I am not allowed to donate organs or blood, etc)
Would I not be allowed to receive an organ?
What about my child (as some pps suggest that it should include kids, too)?

It's more if they hadn't opted out or given the matter any thought, there would be presumed consent

Yes, that's the point of the entire idea. Anyone who doesn't consent can opt out. If they can't be bothered they don't care, do they?

it should be the case that if you are on the register, that's the end of the story. No relatives overruling the deceased's wishes

I think the reason it is that way is because if push comes to shove and your mother throws herself over your dead body and freaks out, they aren't going to call security in to remove her so they can harvest your organs. It's just a practical thing that I suspect doesn't come up all that often.

So why waste a penny on a stupid register then ? I'm sure the NHS could find better uses for it.

To me, part of the point of the registry is to let your next of kin know what you want so that they have peace about it. It allows the next of kin to flow with that decision, rather than actually making a decision

So it's a(n expensive) proxy for talking with your relatives before you die

Worth noting that if it's determined an autopsy is required, then no amount of mother throwing herself over the body is going to prevent it. Which tells you the priorities of the state. Punishment before preservation.

If they can't be bothered they don't care, do they?

No, it doesn't not mean that. Not everyone in the country will be well informed about their rights or has the capacity to act on the information.

@Matildatoldsuchdreadfullies
I wanted to respond to your post, first to say how sorry I am for your loss. The reason I have always been an organ donor is to help save people who can use my organs after my death.

I wanted to respond, however because you wrote this:
"However, any person who opts out because they don't like a new paperwork system is just a bit of a twunt."

Perhaps you meant me. Which would be unfair. This isn't about paperwork. This is about an unethical principle being made law. About precedent. About state powers. These are all valid concerns, and everyone should consider them. I would hope your frustration might be aimed at the people who claim they want to be donors but haven't been arsed to make the call or fill in the form to put themselves on the register. The ones who cannot find a few minutes to see through the commitment they claim they would make. 80 % of people say they would be donors. Only 36% have registered. Efforts should be invested in persuading the missing 44% to formalise their wishes. Efforts should be made to close the gaps where willing donors aren't even being approached and those opportunities are lost. Or where transplant co-ordinators are afforded the opportunity to spend more time sensitively with families. Countries where the co-ordinators spend 3 hours with a family in the time leading up to switching off life support, have a much greater percentage of families going ahead with the donation, compared with countries

I am a donor. Not only was I on the register for years, but if I die tomorrow my entire family know my wishes are to continue to be a donor. Those wishes are indisputable.

Removing myself from the NHS register will be, I hope, a reversible decision. It was done with a heavy heart - and is a protest with a tangible result that is made PURELY to pressure the government to rethink forced donation. I could have chosen to stay on the register, make my objections known, and certainly been ignored, as my protest against a dangerous and morally wrong principle - presumed consent - has no teeth. My direct action is all I have tangibly to persuade the decision makers that this is not a welcome change, and that it may backfire amongst the very people who have always put their money where their mouth is and actually already committed to be donors. I'd not be surprised if a significant proportion of people criticising existing registered donors for objecting to opt out systems, are in fact not registered themselves. There will be some significant hypocrisy from unregistered folks lecturing registered folks as a point of principle.

In the same way as people go on strike and inconvenience the innocent general public in order to convince decision makers of the impact of their decisions, so is this my direct action. When diplomacy fails, legal direct action reminds decision makers that the masses have rights, have a say, should be listened to.

I DON'T want to be doing this. But I believe that it is more powerful to demonstrate that a proposed measure may have a tangible backlash, than to merely say so. Many doctors are concerned that groups in favour of voluntary donation will backlash against forced donation.

If the government listens, it can and should provide options that increase participation - AND INCREASE DONATIONS - without resorting to overriding people's wishes about their bodies.

*compared with countries that spend an hour or less. (Sorry about the missing sentence)

As referred to in earlier posts, the results on whether opt out systems produce more organ transplants are unclear at best, and in a lot of countries there has been lower organ donation since such a scheme was introduced.

www.bbc.co.uk/news/health-41199918

My fear is that the government will introduce this to "be seen to be doing something" about organ donations but it will actually produce worse results. What is really needed is looking at how to improve the system on the ground and spending actual money on it.

I've always worried that they would be less likely to safe my life if I opt in. Why save one life when you could save multiple people's lives with my organs. Especially considering I'm a rare blood type.

Indeed, DG.

I am a big supporter of the NHS. I've had fantastic treatment and so have members of my family. At the same time, resources are so stretched now and sometimes even basic care standards are missed. I don't trust ALL members of staff or hospitals not to make value judgements to save some lives over others.