Monday, January 14, 2008

I'm sure you've all seen the news over the last 24 hours regarding Gordon Brown's announcement that he is in favour of changing our system to one of opt-out (where it would be presumed that you wanted to be an organ donor unless you registered your wishes that you didn't or unless your family knew of any key reason you did not want to be one at the time of death).

You may have even seen/heard me either yesterday or this morning (Sky, Channel 4 and 2 radio stations).

Anyway what I would really really like (please) is to hear some of your opinions. I am genuinely curious, and contrary to most other areas of organ donation don't hold a strong opinion one way or another when it comes to opt-out. Some people's misconceptions are concerning but I am hoping ongoing publicity will help iron those out.

So please, annonymously or with your name, whoever you are, tell me. What do you think. Opt in or opt out? And more importantly why....please be brave, I could do with hearing what others think.

Then I shall cheat and construct a post in a few days using all of your genius comments. Or something.


Anonymous said...

I am not a CFer or other tx candidate/recipient. Just someone who has known CFers in the past. I am generally in favor of the opt-out system. I didn't like how I had to explicitly state that I want to donate when I got my Pennsylvania stste I.D. card.

HOWEVER...I do think people need to be informed of this as much as possible; it's inevitable that someone is going to complain that they weren't aware that the government assumes you are a donor unless you opt out (that is, in an opt-out country). Some folks have religious views that seem to go against donating because it violates the body of the deceased. I'm an atheist, but I respect (but disagree) with this viewpoint.

Anonymous said...

I don't have a problem with people not wanting to donate their organs, for religious or any other reasons, but I do have an issue with the fact that so people are pro-organ donation yet can't be bothered to sign up to the register and/or let their next of kin know their thoughts on the matter.

And so, I think the opt-out system is definitely a good move, as it means the people who are happy to donate but "don't get around to" signing the donor register don't need to worry about it, and anyone who strongly objects can easily opt-out. There's no issue of the government making our decisions for us, despite what the drama queens out there seem to think, as there is always the option of saying "No, I don't wish to be an organ donor". I think this system could help to save a lot more lives, and, in the end, noone is being forced to become a donor - organs will still only be taken from people who wish to donate, it just means those people don't have to actively sign the register!

Ooh, sorry for rambling! xxx

Anonymous said...

I have been on the fence with this issue in the past but lately I have had a serious think about it and am for the opt out system. I agree with Kat and one of the reasons why I think it is a good idea is that there are enough people that are for organ donation but just don't do anything about it (including, embarrassingly myself and my husband).
I do believe that it will be the government's responsibility to make sure that the method to opt out is as easy as possible for those whom fundamentally disagree with organ donation. They should be able to opt out with no questions asked, quickly and easily over the phone, online, in person, by fax mail, in every language possible etc.
The other consideration which only really occurred to me lately is that even though you are registered as a donor, you really do have to fit a fairly certain criteria to actually be a donor. This presumably means that this programme may not affect a good portion of the donor population as they will be too old, or too sick to be a candidate to donate. This will however mean a world of difference for those on the receiving end of a perfect donor match from someone whom just may not have gotten around signing up.
Admittedly having CF has an impact on my thoughts around this subject but this decision will save lives of many men, women and children with a multitude of illnesses.
Hope this helps.

Anonymous said...

Hi Emily hope your ok?
To save me waffling on... I'll just post a link to an article that went in the paper 2day! A picture of me made it to the front page!

Lets hope that this makes people take the opportunity to talk about organ donation and their wishes!

lots of love x

Anonymous said...

PS sorry i dont think the link fully worked... Hopefully you'll be able to find it x

Anonymous said...

As the mother of a child that has CF we realistically have to face the fact that one day, he might need a transplant to give him any chance of prolonging his life. A very sobering thought for a parent that's already buried one child in her lifetime.

If any system that potentially will give him and the many, many others who need an organ, now or in the future a better chance of survival, in my opinion has to be seriously considered. So I am eternally greatful to each and every person who has shared their story etc to raise this issue and bring it to the forefront of the media.

As I understand it, an opt out system, assuming that every opportunity has been given to make people aware of exactly how the system works, would surely clear up a lot of the problems. If a person feels *that* strongly against, then they have (and in my opinion would) to make the effort to opt out. If you're not bothered either way as such then there is the chance that person could save a life, whereas in the present system it would be unlikely that the would?

A family member has received a kidney and has been given his life back...for that we will always be greatful and have obviously experienced first hand the absolute benefits.

Also, I do wonder if some of those that strongly appose, faced with their own mortality, would still feel as strongly?

Anything that saves lives, legally and as I said as long as people understand how things work in a new system, how could it not be a good thing.

The current stats surely speak for themselves in terms of such a high % of persons in favour of organ donation, but haven't gotten round to doing anything about if those figures were reversed, and the majority against then that's a different story...

It gets our vote hands down.

Sorry for waffling...first real opportunity I've had to put my thoughts down I guess! Hope I've made some sort of sense! Cx

Anonymous said...

Would all those people are anti the opt out refuse a transplant if they needed one........I don't think the majority would!

Anonymous said...

I am 100% for Gordon Brown's new proposals Emily.

I have CF and am currently on the waiting list for a double lung transplant and have been since September 2007.

I am 45 and have known a life of total freedom away from 24 hr oxygen, IV's, nebs and hospitalization. But the biggest reason is I have twin girls of 14 years old and I would do anything in the world to make sure I am here for them for longest time I can possibly be.

So yeah these new proposals may give me a second chance and other CF suffers the same if there were more organs available for transplantation.

Anonymous said...

I do not carry a donor card, but I would not opt out of donating my organs, know a lot of people who feel the same way.

Anonymous said...

I think opt out is an excellent idea. Not everyone can be-bothered filling in the Donor Card and registering and doubt whether they have ever really given serious thought to it - after all, who wants to think of dying and who's going to have what bits while your still breathing? Those who are SERIOUSLY against it will make sure they do something about it should opt out because law. I would never opt out - I have to think of the future of my son's and the implications. Thank you for continuing to raise invaluable awareness. xx

Helen R said...

I am leaning to opt out. The strong negative reactions to this proposal show that people are being forced to think about the issue. There is a risk that we get a higher number of opt outs than the current refusal rate of 40%.

To those who say we should try harder to raise the opt in rate with more education etc - I agree more education is needed (for opt in or opt out). My mother had her donated kidney for 29 years - this is not a new concept. We have been in TV studios pleading for our lives in the nicest possible way and in the meantime too many people have died needlessly.

While people argue over the semantics, which I agree are important, still more of us don't make it and once they have died they can no longer speak for themselves. If this were any other disease for which there was a proven cure/drug something would have been done by now.

It's not our right to take other people's organs but for us asking the question is a matter of life and death. I would like everyone to consider the question. An opt out would force the issue. If they opt out I have no problem with that decision. Then we would have a definitive answer.

Anonymous said...

I am for the opt-out scheme. What good are your organs to you once you are dead they either get burnt or buried. What a waste. Your spirit lives on & that is what makes you the person you are not the machines in your body that draw in air ,pump blood etc.

Many people do not want to face their own mortality & therefore will not discuss their wishes with loved ones or they fear discussing it & upsetting parents,partners children etc.. With the opt-out if someone does not wish to give for whatever reason they will make the effort to register where as at the moment many people who would be happy for their body to be used just 'don't get round to it'.

The register should be able to hold a part opt-out as some people would be happy to give liver,lungs,skin but not eyes & heart (as an example) as the opt in system did when i signed my card many years ago.

Anonymous said...

Opt-in or opt-out...I don't actually think either will work to their full potential without educating people at the same time and allowing them to make an INFORMED decision either way.

From a cultural perspective I think shows such as CSI, Silent Witness etc have done a lot for the educational process....people who want to go to their grave without being "cut up" now realise that unless death is by natual causes the post mortem process sees them with a 'Y' shaped scar on their chest and their organs removed anyway!

However, the most important element is ensuring that everyone has the right to decide, that their decision is respected and that the process can be trusted.

Anonymous said...

Opt-in or opt-out...I don't actually think either will work to their full potential without educating people at the same time and allowing them to make an INFORMED decision either way.

From a cultural perspective I think shows such as CSI, Silent Witness etc have done a lot for the educational process....people who want to go to their grave without being "cut up" now realise that unless death is by natual causes the post mortem process sees them with a 'Y' shaped scar on their chest and their organs removed anyway!

However, the most important element is ensuring that everyone has the right to decide, that their decision is respected and that the process can be trusted.

WENDY said...

luckily neither me nor my children are facing transplant,but know many families whose children will need hearts in the future,sadly i was one of "those" people who were happy to donate but didn't have my name on the list or carried a donor card.
i am happy to say now that i have registered online and am happy to donate anything they want-and have made my wishesw known to various family members.
i hope that if something tragic happened to my children i could be brave and strong enough to pass on their gift to others.

so after my waffle i do think that an opt-out system would be good,as i would never of opted out,although up until a year ago i hadn't opted in.

Anonymous said...

I do not know anyone waiting for a transplant, but I can't see any reason that the system should be anything other than opt out. So many people don't sign up to organ donation solely because they don't get round to it. If it was an opt out system, anyone who didn't want to have their organs donated can easily opt - and are far more likely to do that than someone in the present system is to opt in

Anonymous said...

I think its a really tough one. If you opt out - should you be made to opt out of ever receiving an organ if you needed it? I suspect if it came to that the people who would opt out may rethink their decision.
Also I don't know whether it would work anyway - at the end of the day you would still have to get the families permission to use someones organs. That is the toughtest decision of them all. More transplant co-ordinators should be the way forward.
(i know my first point makes me sound callous - but i think it needs saying)

Anonymous said...

Hi Emily

Never posted before on your site, but have been an avid reader for a long time.

I'm not a CFer, or a transplant patient/candidate, just a healthy person who stumbled across your blog whilst looking for someone else's one day.

As a healthy 32 year old, I'm all in favour of the opt-out system. I already carry a donor card and am on the organ donation register, (I also regularly give blood and am on the bone marrow donation register) and my thoughts are that if I can help just one person (or maybe a few more) whilst I'm alive and indeed when I die, then I've done something good and that my family should respect my wishes and be proud of my decision.

I also think the more publicity on the issue the better to raise awareness. After all, none of us know when we or our loved ones may become ill and need a donor.

Sal, Exeter

Anonymous said...

hi until recently i never really thought about organ donation but my friends little girl has cf , so has one of my friends in holland ( hes just had a double lung transplant - so far hes doing really well)

anyway to get to the point i agree with two points that have been made in previous posts one, that there is a lot of people that would donate but havent got round to it for whatever reason and that i think if people would except a transplant they should really be prepared to donate also.

im now a blood and organ doner aswell.

Anonymous said...

I have a friend with CF and have known others who sadly have not received their transplants in time.

Whilst I understand that some religions/belief systems are anti-organ donation I can't see why an opt-out system wouldn't work. As many other posters have mentioned, as long as people are able to make an informed decision and opt-out, no questions asked then there is little reason to not support this development.

When you look at the organ donation statistics and see that you are far more likely to be in need of a transplant than ever being used as a donor, how many of us would refuse that chance?

So many people are pro-donation but either don't sign up at all or do but don't discuss it with their families and this frustrates me more than any thing else.

Regardless of whether the opt-out system goes ahead, the fact that people are talking about donation and keeping it in the headlines is great and hopefully will inspire those who 'don't have time' to sign the register to get around to doing so and saving someone's life.

Anonymous said...

Absolutely, 100% agree with opt-out system. Kat took the words out of my mouth basically. However I do think that those who do opt out should also not be eligible to receive a transplant of any kind, after all they dont believe in it?...
I do respect peoples religious view on it but I have no time for the people who "just dont like the idea of it". In addition I think healthy people should be called up to give blood. In South Africa you receive points when you give blood and having so many points means that you can have blood for free should you need it. This may not be relevant to the topic here but transplant ops need blood donors too!
The opt out system will make a big difference to many peoples lives.

Anonymous said...

I have always been very pro opt out, I recently had a kidney transplant but as far back as I can remember all my family have discussed how we would be willing to be donors, and until prevented from donating blood, used to do that on a regular basis. When I moved to the UK nearly 20 years ago I carried a donor card and a few years ago signed up online.

However I do think that there needs to be considerable education before such a system is enacted - you just have to read some of the scaremongering stories and misconceptions to know that it would not be a viable system for some years.

For example - one misconception is that somehow people in a PVS would be donors - of course that is completely different from brain stem dead, which is where donors are actually identified.

Also all the major religions in this country have confirmed that they either do not rule against it or even that they regard it as a 'duty' to donate so that is not a blanket reason for refusal.

We have to realise that all these misconceptions need to be addressed because we could not expect surgeons to remove organs if the family were strongly opposed, even with an opt out system.

Anonymous said...

I think that this system sounds really good. I am not really sure what it exactly involves - but i think i get the gist of it! Basicaaly i think that it is a really great idea - so many people dont donate organs purely because they dont know about it or just didnt have a card. I think that that is just wrong, people shouldnt not be able to save people purely because they didnt have a card! This new system sounds so much betr! what happens about children - because i would definitely want to donate, but would they automatically donate mine? Anyway in answer to your question i think that this new system would be much better! Love Jennie

Anonymous said...

Opt out. Like the smoking ban, it will be clearer and all round better for future generations. People DO still have a choice.

Education as well though, if people understand the importance of organ donation, and hear some stories of those waiting/those who have received, they would be far more sympathetic to the cause.

I don't like terms like 'Organs WILL be removed from the dead (ie whether they/the family like it or not.) If people definitely want to opt out or their next of kin definitely wish to refuse consent then it has to be respected.

I for one would rather not have had my liver if I thought the recipient and/or their family were against it. It would feel like I stole it!

I am hopeful that Optouters will be in the minority if the plans go ahead.

I am eternally grateful to my donor and her family. I hope if any of them ever need an organ that they can find someone equally selfless and caring.


Anonymous said...

Opt out. Simply in the hope that it will increase organ donors and because i don't feel there is a strong enough argument against it. And if one is really against it you can 'opt-out'. I don't feel 'anti-opt outers' have a leg to stand on because the opt-out system does not remove their choice.
I'm concerned this is going to become a political issue, rather than one about allowing people the chance of life. Those who do object, do so primarily as a stance against Gordon Brown, New Labour and/or the 'Nanny state'. This should not be about political leanings (coming from a politics student) or a concern for our individual freedoms; it's about saving as many people's lives as possible through the most amazing gift anyone could have.
Most people are lucky enough to not have to face their own mortality, which is why those of us who have to can speak about this with such conviction and passion.
I see very few refusing the organ of someone who simply wasn't bothered either way, and didn't opt-out.

My Diabetic Sweet Life said...

As a result of finding your blog, I have decided to donate my organs after death. I do believe people should have a choice about whether to donate or not. However, the current system of having the "default" choice as not wishing to donate leaves it open for too many organs to be missed just because people are apathetic about the whole organ donation issue. Therefore, I favour the opt out system - so long as it's not cumbersome and those wanting to opt out (hopefully very few) can do so with relative ease. Personally, I'll be making sure my details stay listed - but I'm still working on my husband (who seems to be reluctant to discuss his own mortality).

Anonymous said...

Def in favour. Come on what do we need our organs for 6feet under. At least you can give life to someone else.

Anonymous said...

Dear Emily,

I live in France and tey have the opt out system, and nobody seems to have a problem with it.
I am definitely for it, otherwise there are so many epople out there thaht would like to donate but never get round to signong up !
I truly believe that those who do not want to be a donor should not be able to be donated an organ if in need. OK, that sort of system could just never happen, but it should...