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

Actually, I don't think it is as simple as it sounds. Firstly, there are researches that claim that in case someone is brain dead and organs are harvested, the person can still feel the pain of organs being removed. I am not saying this is necessarily true but the fact is that we don't know. Secondly, you cannot not think about the fact that maybe doctors would fight more to keep someone alive if the person wouldn't be an organ donor. I know it comes to ethics but they are all human after all.

@MaggyQ Oh thank you. I don't tend to talk about it much if I'm honest, most people get a bit weird about it. You get the comments "oh I couldn't carry my baby knowing they would die" "I wouldn't want someone to cut up my baby" etc. Rarely does anyone ever say it was an amazing thing to do!
I've never shared it on any of the Facebook pages, no. Could you link me to one? It's something I would definitely consider doing.

Agree that only a small percentage of people are actually eligible for donation.
We now have to refer every patient on whom we are about to withdraw treatment to the organ donation team. They ask us about the patient's medical history/current medical issues. Most patients are not suitable so relatives don't actually get informed that their loved one has been referred in the first place because we've not gone beyond first stage of referral. There's an incredible amount of scouring through medical notes/blood tests etc before rels are informed of their loved one's prospective eligibility. Obviously as it becomes apparent that the patient is a suitable candidate, the docs in conjunction with the organ donation and bereavement team start to bring the subject up with rels - usually the family have been well briefed beforehand about how desperately sick their loved one is and that the prognosis is very poor so to be honest it doesn't come as that much of a shock.
I have had the priviledge of caring for several patients who were chosen for organ donation, both non heart beating and patients with brain death - the medics/nursing and donation teams showed the utmost respect for the patient and their families and went out of their way to involve them in every step of the process, from performing brain stem tests to care of the patient after they've died. It's not something that happens frequently but when it does it's a sombre respectful event.

You do realise doctors will think about your donor state before you are fully dead right? I don’t want that factoring into a decision over whether they go the extra mile to recover me. Plus some things have to be donated when your body is still alive but you’re just “brain dead”. Risky imo

Just because you want to donate your body , doesn't mean they will take it. I work in an area where this is sometimes requested. A medical
school needs to agree to take the body.
They won't take if you die of certain illnesses. They may just take slices of bits eg. brain.
They can contact your NOK up to three years later to dispose of the remains.
Regarding opting out , incredibly selfish , what do you think you're going to need your organs for ??

fanjo9 sorry but that is complete rubbish and scaremongering. Look at the brainstem test procedure and it's a pretty comprehensive way of determining whether someone is brain stem dead. The brain stem controls functions vital to life including consciousness, sensation, breathing, heart beating. If the brain stem is dead that patient cannot by definition feel, hear etc
Brain stem death sadly means that the patient can never recover.

2 people I know are here because of transplants.
One lady who has a young son, she had a heart transplant!
My daughters Dad, had a kidney transplant when she was 8 years old. The kidney failed after a year. That year by daughter had a dad that could run around every day. Dialysis was just a memory.
Since his kidney failed we now wait for the day his body can't take any more. He is a very poorly man. That young person who donated his kidney gave my daughter a lovely year.

By all means everybody has the right to opt out, but staying in can give beautiful children their parents for just a bit longer and give them the chance to experience what every child deserves...to be able to go to bed thinking about the next day with a smile...not dreading what may come!

Doctors do NOT treat people less in the hope
they will die and donate an organ. Ridiculous comment

Nobody has yet explained HOW the new system creates an increase in available organs over the old system, and despite my reading around I can't get to the actual answer.

Comparing the two scenarios, opt in vs opt out, I'm unsure practically HOW this new system causes organs to be harvested that would NOT have been donated under the opt in system.

Barracker I asked the question about who would be the 'extra donors' and no one answered.

I think its the fundamental thing to consider and if you haven't considered this, then you haven't really thought the change through.

The reality its most likely to be more vulnerable people who are the 'extra donors' or people with relatives who are more vulnerable and less able to say 'no' to people in authority often because they don't fully understand whats happening. For example religious minorities.

I think the point that absoluetely no one wants to address the issue of who are the 'extra donors' and either actively ignore the question or this hasn't even entered their heads or straight up think its irrelevant, is quite concerning.

Of course for everyone who says they will donate anyway, this doesn't matter.

As I said before though, how those people feel about the change doesn't really matter. Its the people that are actively being targetted by the change whose opinion matters in this respect.

And as part of that we should consider why previous initatives hadn't been successful with these groups.

Regarding opting out , incredibly selfish , what do you think you're going to need your organs for

I agree about life saving organ donation, e.g. heart, lung etc. but looking at it another way, why would anyone need my reproductive organs for example (I know that isn't currently done in the U.K. but has been overseas, or at least it's a possibility)?

PLEASE people, do some reading......pretty much all of the questions/concerns people are posting are all answered/addressed on the website.

www.organdonation.nhs.uk/

In answer to the reproductive organs concern this is from the website

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

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.

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.

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

As I said earlier, I will opt out despite having been registered for many years. I did so this morning - someone gave the link earlier in the thread. I am happy for my organs to be used and will leave instructions for my next of kin but don't believe the state should have control over a person's body, alive or dead.

This just seems extra to me. Like what the fuck is the point really?

How do they “have control” if there’s an option to opt out, which you have taken?

RedToothbrush I absolutely agree that the extra donors will be people who haven't given consent, assumed or otherwise. Families and friends could well feel that they can't say no to a Dr or consultant or could even assume that it is something you have to do in the UK in return for the free treatment the person received

Thank you for clearing that up MGC31. Im glad it only covers 'routine' transplants and hope it stays that way even if other options become available in the U.K. I don't think I'll ever be comfortable with the idea of donating limbs.

I'm still concerned about how changes will be communicated though as things do change in time. I'm pretty sure bowel and tissue didn't used to be an option.

Nobody has yet explained HOW the new system creates an increase in available organs over the old system, and despite my reading around I can't get to the actual answer.

It’s very simple. Many people are happy to opt in but simply don’t or forget etc. Those who want to opt out are more inclined to do so.

If people are really opting out on principle but actually didn't mind and would have donated when it was opt in - why not get round that yourself. Opt Out today. Then in the morning actively chose to opt back in. There - principle sorted and it is still 'your choice' rather than the state making the choice for you.

In answer to some questions:
-Opt out will lead to more organs being donated as we know that a no is a no. Families will currently sometimes say no as their loved one could only register if it was a yes and they were not sure what the decision was. They will know their loved one would have had that opportunity to register that decision if they had wished to.
-We will still always approach families for consent
-It does not apply to those under 18, lacking capacity to make the decision, those in UK for less than a year, (or there not by choice). If an English resident died in Scotland before the legislation changes there- it does not apply.
-If you are 'brain dead' you are dead. Irreversible. Unable to ever be conscious, to breathe, and you are certified dead- by two senior doctors after rigorous testing. There is no cases of anyone feeling anything or recovering. You are dead. The term brain dead is not used so much nowadays as it is often confused with brain damaged which is where all this scare-mongering comes about.
-Opt out only covers standard organs- like heart, lungs, liver, pancreas, kidneys. NOT novel transplants like womb or lower limb that are so rare and families would have to give express consent in these instances
-Patients would never be treated differently because of the potential for them to be a donor. Before becoming a specialist nurse in organ donation I worked in Neuro ICU for 20 years. The scenarios are totally separate, and patients are only referred to us when treatment is futile or the person is already dead by neurological criteria.I recommend everyone read the info on the website before making any decisions either way.
www.organdonation.nhs.uk/

There have been surveys and studies which show that many people who would happily donate just never get round to actually registering on the donor register. I can't remember the figure but it was pretty high.

On the other hand, if someone is adamant that they do not want to be a donor they will make sure they opt out

It appears that opting out can only be done online, so those without access to the internet (e.g. older people or poorer families) will have to find another way of opting out. If they do phone the donor register, having had to search out the number, they may be 'gently' coerced into changing their mind. I don't believe that people 'forget' to opt in at all. The government have just made it harder to opt out, rather than easier to opt in. I cant believe people are okay with the implications of assumed consent? What will be the next thing that people have to actively opt out of? I think people are being quite blinkered about the consent aspect because the alternative is to be assumed "incredibly selfish" for even questioning it.

Cheesespreading
You seem to suggest that the current 'opt in' situation ONLY releases organs from those who have actively opted in.
That isn't the case.

I tried to give example scenarios upthread, of the before/after situation and asked how it would be different.

Currently, if the service does not know either way, they ask the next of kin, who represent the deceased's wishes.

I can't work out how you think the new system WILL release an organ, after consultation with the family, when the old system would NOT release an organ after consultation with a family?

In both the old and the new scenario the transplant service are unaware of the deceased's wishes, whereas the family are more likely to know or be able to surmise based upon their close knowledge of the deceased.

It’s not that people ‘forget’, its more that they’re apathetic about it......just don’t get round to it, don’t think about it etc etc. They’re happy to donate but it’s just not on their radar so they don’t sign up, don’t talk to their families etc. An opt out system means this group of people will be included and will widen the number of potential donors.

MGC31
What do you think currently happens with that apathetic cohort under the opt in system? They still are treated as potential donors under the current system, they're not excluded for their apathy.
Their families are still asked to make a decision.

How do you see this being different in the opt out system?

The below is from the website re. Involving families.

Do I need to tell my family and friends that I want to be an organ donor?
It is important to discuss your decision with your family and friends so that if the time ever comes, those closest to you are in no doubt that their loved one wanted to be an organ donor.

What if my friends or family object to my organ donation decision?
If your family, or those closest to you, object to donation even when you have given your explicit permission (either by telling relatives, friends or clinical staff, by joining the NHS Organ Donor Register or by carrying a donor card) healthcare professionals will discuss the matter sensitively with them.

They will be encouraged to accept your decision and it will be made clear that they do not have the legal right to veto or overrule your decision. There may, nevertheless, be cases where it would be inappropriate for donation to go ahead if donation would cause distress to your family.

What if I have no family or relatives?
If you have no family or relatives NHS professionals will speak to your GP about your medical and social history. But you should also tell a close friend or colleague about your decision as they may be able to provide information to help us.

What happens if my organ donation decision is not known?
Where the decision of a person who has died is not known, the Human Tissue Acts rank people who had a relationship with them. This enables healthcare professionals seeking permission for donation to know who they should approach and in what order. This ranges from a spouse or partner (including civil or same sex partner); parent or child; brother or sister; other relatives, to a friend of long standing.