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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To opt-out of organ donation

407 replies

Jamiek80 · 12/12/2017 21:13

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!

OP posts:
BenLui · 12/12/2017 22:48

Jamie I’m appalled by this thread.

My friend’s Mum died of kidney failure after years of dialysis.

You are scare mongering and spreading disinformation. You should be ashamed of yourself.

scotchpie · 12/12/2017 22:48

I am still alive today because I was one of the lucky ones and received ' my gift' last year.

Only state facts OP, it's not nice for donor families to hear!

meredintofpandiculation · 12/12/2017 22:54

I can't find the bit about face transplants on the NHS website - can you give a link?

reallynearlythere · 12/12/2017 22:55

Rest assured, the medics have a very, very long list of questions which next of kin are expected to answer. It goes into minute detail over which bits of your body (organs, skin, cells etc) can be used and whether they can be used for transplant and/or research. You can clearly state you do not want part xyz to be used.As someone who had to answer the questions, whilst understanding their need to cover any possible litigation. I personally found this part of the donation system the most distressing as at times they forgot they were talking about my nearest and dearest. Has it put me off being a donor - no, because I believe in the greater good and as many have said, I would want to take advantage of someone elses organs if the need arose.

slashlover · 12/12/2017 22:57

As a side note, a friend's father chose to donate his body. After two years he was cremated by the university and the family were asked if they wanted them or they could have been scattered in the crematorium remembrance garden. They got the ashes back and held a small gathering and scattered them.

This was in Scotland btw.

LoverOfCake · 12/12/2017 22:57

I haven't read the whole thread because in truth these threads always go the same way.

The reality is that the "if you don't allow your organs to be donated you are uneducated/you clearly don't know what you're talking about/if you don't donate your organs then you should be prepared for your children to die," mob are no more educated than those they seek to judge.

Opt out means nothing other than that in the event of your death your family will get to make the decision with regard to your body and what happens to it, in the same way that even carrying a donor card now is meaningless other than that the medics are aware you are on the register but your family still have the overriding decision and can still decide to refuse for your organs to be donated, even if you have expressed a wish for them to be.

In reality we don't need an opt out system, we need a system where people speak to their families before they are in the position to express their wishes in the event of their untimely death. Your family can only give their informed consent if they already know your wishes in advance, and as much as someone may consider it wrong for a family to override your wish to be an organ donor if you haven't had that conversation with them previously, it is equally wrong for a family to decide to donate your organs if you have decided you don't wish for this to happen but hadn't communicated it to them previously.

People often uphold Spain as an example of a country where organ donation has increased after opt out was introduced, but this is actually not true, as what happened was that an education programme was launched at the same time to talk to people about how to speak to their families about their wishes, while organ donor coordinators were also taken through a programme to ensure the most sensitive way to speak to the families of potential donors. Evidence is actually more prevalent that when opt out is introduced on the whole, donor rates decrease signifficantly.

I am surprised that a website like MN where people talk about consent on a regular basis, those same people feel that all bodily autonomy and ability to consent should be lost at the point of death. Do you really think that it is beneficial for your body to become the property of the state when you die? Or perhaps you would rather that your family, the ones who know you best, who would know your thoughts and wishes, be the ones to make the final decisions as to what happens to your body if you die?

I have no qualms about my organs being donated in the event of my death. There are organs of mine which would not be suitable given my current health, however I may have something which someone would benefit from, and as I'll be dead they won't be of much use to me.

However I refuse to allow my body to become the property of the state, and as such I have already had the conversation with my family with regards to my wishes, wishes which I know they will uphold in the event I am not around. So I know that if I die my family will uphold my wishes, and as such, if opt-out were introduced I will be opting out, safe in the knowledge that I have had a conversation with those who are best placed to make the decisions I will not be in a position to make for myself.

GoldenBlue · 12/12/2017 22:57

I believe very strongly in organ donation. I know I would fight tooth and nail if my kids needed one. So I have a responsibility to pay it forward.

Since my kids were young we have discussed this, everyone in my family knows that I want any part of me that could help someone else to be put to good use.

I don't believe I need those bits and pieces once I'm dead, and cremating them would be a waste.

I think it's important to stress my wishes to all now, so that in case of death my family don't have a hard and worrying decision to make. They know my views and I hold them responsible for delivering.

I to think opt out is a good idea. Those people that care about keeping their body parts into the grave can do so. Those people that are indifferent or haven't expressed an opinion can now help very poorly people to have a better life, of a life at all.

Having to ask grieving parents, partners, children, at their most dreadful moment to make what might be a hard and painful decision is not the right way to go about improving organ donations. Let's encourage people to make a decision in advance.

MilkTwoSugarsThanks · 12/12/2017 22:58

Every time this subject comes up, I can never quite understand why peoples wishes - as recorded by carrying an organ donor card, registering with a central agency - aren't respected as a matter of course ?

It must be very, very, very hard to accept the death of someone who looks very much alive, and to agree to say your final goodbyes to someone who looks like they're "just" in a coma that they could wake up from, and sign the forms to say yes, wheel them away.

I could not let my son go in those circumstances and I would not judge anyone else who couldn't let their loved one go either.

Jux · 12/12/2017 22:59

I’m not able to give blood any more - I used to do it regularly, but since ms was diagnosed, I am no longer wanted (I think it’s the meds). Weirdly I am able to donate body parts, apparently.

I’m happy for them to take whatever they want when I die, but I doubt they’d want much, probably not even my corneas Sad

I think an opt out system is great, but I don’t agree that people who opt out can’t receive organs. The NHS is for every one of us.

Stormybubbles · 12/12/2017 22:59

I work in the world of transplantation and quite frankly much that I have read on this thread has shocked me.

Nothing will be done without the families permission, many many donations are refused each year by families because the are not aware what their loved ones wishes are, may people may have been prepared to sign up but for one reason or another never got around to it, this will help eliminate it as those who object to donation should actively sign up to opt out.

The family will still have the final say, no one will go against their wishes (despite the wishes of the donor)

Face transplants are not a thing as it stands, and unless you have exactly the same bone structure as the donor you will not look like them

You will not be legally alive when the organs are taken, live donation is completely separate and definitely not included in this.

If you are willing to take an organ why shouldn't you give one (personal opinion) however many people aren't.

Most people who die would never be eligible to donate, you have to die from certain conditions in certain places which is why over 450 people out of the 6000 odd on the waiting list dies last year which is why increasing the number of people who are prepared to donate is vital.

Donation is a very personal choice and no one is being forced to do anything, what this is doing is creating media attention and actually getting people to talk about the issue and hopefully making their wishes known to those closest to them so should the time come the decision for the family is made easier.

Phew, sorry long post!

Sallystyle · 12/12/2017 23:01

I hate all this stuff that goes along with organ donation. It's an amazing thing to do but people shouldn't feel pressured into it or feel like they are morally corrupt if they don't want it for themselves.

No one should feel obligated to donate. I might not understand their reasons but I don't want to punish them by saying they don't deserve an organ if they need one. Since when have medical issues been based on perceived morals?

The OP's reasons against it are frankly, quite crazy though.

My children got to spend a couple of extra months with their dad due to someone donating bone marrow. I will forever be grateful to him. I am very pro organ donation for myself, but if it became a 'you must be on the register to receive' thing that would probably make me opt out, because that is just unethical in so many ways.

NurseButtercup · 12/12/2017 23:01

@Loverofcake

Well said and thankyou Flowers

PersianCatLady · 12/12/2017 23:02

MilkTwoSugars
You do know that in a lot of circumstances where organ donation is possible, ie sudden death , post mortems are required any way?

Generally, organs don't come from people who die of old age, they come from people who have had accidents and the like.

Even if you don't donate their organs maybe because they gave suffered enough, a common reason, they will still probably have a post mortem.

shabbs · 12/12/2017 23:02

If any organs I have are needed by anyone else....well, take them! My DS3 was crushed to death in an RTA 25 years ago just before he was 8. When he was 4, we were waiting for a prescription in our chemist. He saw the donor cards and asked about them. Matt was a hysterical cheeky chap, he said really loudly 'do they do donor willies, cause mine is little and I want a bigger one lol!' He carried his card, with pride, every day. He was DOA at hosptal but I mentioned to the nurse his desire to be an orgon donor. She found his card, came back to me sobbing and I gave permission. I recently found out that he donated his corneas to two people.....giving both of them the precious gift of sight. I dont care about opt in or out...I truly dont. When we die...we die. To help others to live is the most precious gift we can give. Remembering you forever and a day Matt xx

scotchpie · 12/12/2017 23:04

How amazing Shabbs & what a hero Matt is 💚

Clitoria · 12/12/2017 23:04

I’m embarrassed for you OP
Also, how did you get a tattoo that you didn’t know about?
Never mind...

Nanny0gg · 12/12/2017 23:04

What on earth difference does it make whether it's opt-in or opt-out? You still get to make the decision.

And it's bloody minded and petty to say you'll opt-out if they switch it round. The reason for the change is to make more people aware that their organs are needed.

And people can get on their high horses all they like, when you're dead you're dead. You don't need the organs any more, and keeping them so your family can bury or burn them is imo, mediaeval. You could give someone else potentially decades of a good life and transform their lives and those of their families.

And if you agree, no-one should be able to override your wishes.

Sallystyle · 12/12/2017 23:05

Organ donation is not as straight forward as it sounds. It’s a long, drawn out and highly emotional process. I went through it with my father who was pronounced brain dead following a stroke. We all wanted to donate his organs (as did he, he was a donor) but after two days of mental torture waiting for him to fulfil the criteria to be pronounced ‘braindead’ my mother could not take any more and we turned the machines off.

There was a tragic death in my husband's side of the family not long ago. The whole process of organ donation was pretty bloody harrowing for them, for similar reasons as you described. In the end they couldn't actually take them. I won't go into many details about how that came about as i'm not really sure I even understand it, but it was really really awful for all involved and nothing like as straight forward as people make out.

PersianCatLady · 12/12/2017 23:06

Matt sounds like an amazing little guy.

Ceto · 12/12/2017 23:06

at what point do they decide they can take your organs while you’re still alive?

Clearly the proposed legislation is never going to allow this - not least because nothing is more guaranteed to force every potential donor to opt out. Please tell me you don't seriously believe it is even a possibility?

Airbiscuits · 12/12/2017 23:07

After having researched brain death, brain stem death and the risk of misdiagnosis of both, I’m deeply uncomfortable with the notion of organ transplantation (apart from kidneys, which you can do alive or properly dead in some circumstances).

Death is a process, not an event, and in my heart I believe strongly that what is termed brain stem death is perhaps irreversibly dying (if correctly diagnosed), but not dead.

By that token, I wouldn’t be happy to take an organ either. I get the impression most donors don’t know what they are signing up to, and that concerns me. And it concerns me even more if it were to be opt out, if there were no accompanying education as to what brain stem death is, and how it is diagnosed (the diagnosis itself being a process that has no benefit to the patient, and can cause potential harm).

Flame away. But my view is that I am not dead until my heart stops beating of its own accord.

Sallystyle · 12/12/2017 23:08

I am surprised that a website like MN where people talk about consent on a regular basis, those same people feel that all bodily autonomy and ability to consent should be lost at the point of death. Do you really think that it is beneficial for your body to become the property of the state when you die? Or perhaps you would rather that your family, the ones who know you best, who would know your thoughts and wishes, be the ones to make the final decisions as to what happens to your body if you die?

Absoutely this.

MilkTwoSugarsThanks · 12/12/2017 23:09

PersianCatLady - yes I am aware. But generally for a post mortem the body doesn't need to be kept "alive" in the same way it does for organ donation.

shabbs · 12/12/2017 23:10

Thank you ladies.....hope Matt has a massive willy now. Sorry if that sounds rude....he was a typical little boy! His class mates still post on fbook with their funny memories of him. How great to be lovingly remembered 25 years after you died xxxx

Stormybubbles · 12/12/2017 23:13

Airbiscuits
I am intrigued as to which part of brain stem testing may cause harm, please advise