Guest post on Max and Keira’s Law: “People will still have a choice whether or not they want to donate.“

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Last week (Friday 15 March), the Organ Donation Act received Royal Assent and passed into law in England. The law has been named Max and Keira’s Law after the inspirational Keira Ball, who donated her organs when she died aged 9 years old, and the young recipient who received her heart, Max Johnson.

The new law means that from spring 2020, all adults in England will be considered a potential organ donor unless they record their decision not to donate or are in one of the excluded groups. These groups include under-18s and people without the mental capacity to understand the law change.

Max and Keira’s Law is now in place, however, it will be a year before the new system is introduced. This will allow time for people to understand what the law change means and have time to consider their options.

The move to an ‘opt-out’ system in England follows a successful change in Wales in December 2015. Just a few months ago, the Welsh government published figures that showed that Wales now has the highest organ donation consent rates of any of the UK countries.

Why does changing the law matter?
Currently, only around 5,000 people every year die in circumstances where they can potentially donate their organs. Each donor is incredibly precious. The more people who
donate, the more patients will receive the life-saving transplant they desperately need. While the majority (80%) of people in England tell us they support organ donation, this is not reflected in the numbers (38%) who have currently registered their donation decision on the NHS Organ Donor Register. We hope that more people will register their organ donation decision and speak with their families regarding their choice.

What does the law change mean for me?
People will still have a choice whether or not they want to donate and organ donation will still be a gift. The families of potential organ donors will still be approached before donation goes ahead. Regardless of whether or not you decide to donate, we would encourage you to register your decision on the NHS Organ Donor Register.

Common questions and misconceptions

Will you automatically take my organs if I don’t opt out?
No. If someone hasn’t registered a decision then we will speak with their family and ask what their relative would have wanted or what the family feel is right. We encourage people to register their decision, but families will continue to be involved, so it is important to share your decision with them.

Am I losing control of what happens to my body?
It will still be for you to choose if you want to be an organ donor and you still have the ability to opt in or opt out. Your family will always be approached before donation takes place, so it’s important that family and friends know your decision.

Will doctors still try to save me if they know I’ve agreed to donation?
If you are seriously ill or injured, your medical team will always do everything possible to save your life. If, despite their best efforts, death is inevitable, only then will organ and tissue donation will only then be considered. Only when end-of-life care planning starts is
the NHS Organ Donor Register accessed and the possibility of organ donation discussed with your family.

If I am happy to donate some but not all of my organs, should I opt out?
If you are willing to be a donor but want to specify which organs and/or tissue you would like to donate, you should register as a donor on the NHS Organ Donor Register. This allows you to state which organs and tissue you are prepared to donate.

Why do you seek the support of families for donation?
Families are always involved in organ donation discussions. This is out of consideration to the family and to gather important information, such as medical, lifestyle and travel history. Family information, together with medical notes and tests, is vital to understanding whether the person’s organs are safe to transplant into somebody else.

What now?
There is plenty of time before the new system comes into effect. By registering your decision and speaking with family, you will make it easier for them if you die in circumstances when organ donation is possible.

Visit the [[https://www.organdonation.nhs.uk/faq/what-is-opt-
out/ NHS Organ Donation website]] to find out more and to register your decision.

MNHQ UPDATE: Phil Walton, operational lead for Opt Out, will be returning to the thread today (21/03/2019) to answer your questions from 6pm-7pm

@NopeNi

"If you have already made a decision about donation and shared this with your family, they would be expected to support your decision, whatever that is. However, consideration will always be given to the views of the family, and clinicians will never proceed if the family objects strongly."

Thanks for replying to my questions, I appreciate it. I'm still confused though.

To clarify: if I said no, but had no family or close friends at the time of my death to reaffirm that - or my family didn't remember my wishes or actively went against my decision ... would you still go ahead? Even though I'd opted out?

If you had opted out, or not registered a decision and there was no family present / available / or none at all, then donation wouldn't go ahead.

The best way to take the risk of the family not remembering your donation decision is to record it on the organ donor register - whatever decision that is - its available 24 hours a day to the Specialist Nurses dealing with a possible donation. www.organdonation.nhs.uk/

@AutumnCrow

Thanks Phil, for answering my question.

For what it's worth, I think all donation teams and records should capture BOTH sex and (as optional) gender identity. Stick with biomedical science.

Look forward to your update.

You can look forward to my organs.

I hope not too soon :)

But my abusive family could do whatever they wanted?

No personal offence at you but that's appalling.

You need to make that clear - the actual message isn't "you can opt out", it's "we'll just ask people nearby what they want as you lie dying".

Ok folks - my hour is up.

Thank you for the questions - i've really enjoyed speaking with you. I'm really sorry if i've missed your question or not answered something fully. I will be taking some of these questions away as there are some that i haven't been asked before, so its been an education for me too.

We're always updating our frequently asked questions on the website, so feel free to check in there and see if we can help with any other questions. While you're on the website, take 2 mins to record your decision. www.organdonation.nhs.uk/ - and let your family know what you decide.

Thanks again
Best wishes
Phil

I have yet to hear of a Specialist Nurse who's been about anything other than getting hold of the parts. I'm appalled that despite opting out the family is still 'approached' about this.

PLEASE add a comment box on the form.

And thank you

For what it's worth, I think all donation teams and records should capture BOTH sex and (as optional) gender identity. Stick with biomedical science.

Look forward to your update.

This, so important, please show respect for women and make a stand for science or you will lose this donor.

I am far from reassured by these replies. I do not want my family approached. I have registered my non- consent and that really should be the end of it.

Exactly, Elphame. NO should mean NO. Why is this allowed when it comes to donation of organs when it is not with any other decision regarding bodily autonomy? If you don't want your loved ones to be approached by one of these people, who, let's face it, real goal is getting hold of the parts, for 'clarification' then that should be that. If your family knows you have changed your mind they can seek the person out, be handed a card and told they can ask to have that person paged. I'm appalled the family will still be harassed in such a fashion.

I'm not reassured at all by the responses and will remain opted out until I get further information.

It's a no from me.

exactly Elphame

and what is this business about family "knowing" what you want? If you haven't written it down, how will this be proved?

the last thing you wrote down should be the final thing, and that cuts both ways, organ donor or not.

The last thing you wrote down should be the final thing

Exactly this. I do not want my wishes being overridden by someone with their own agenda.

the idea of something happening to me and my 80 year old mum being approached with "are you SURE about Grace having opted out" is too awful for words.

If you have concerns that a family member or someone close to you would not respect your donation decision on the Organ Donor Register, then there is the option to appoint 2 representatives to make that decision for you. The law (as it has always been, not just new for this opt-out law) places an appointed representative highest of all in the family hierarchy. This will allow you to appoint someone you know and trust to carry out your last known donation decision.

There is absolutely no need for any of the above. It couldn't be simpler - whether a person has opted in or out - at the time of their death their decision should be acted upon. A family member's opinion is irrelevant.

What the hell is the point of the register?

Why have such an administrative costly nightmare when it comes down to the whim of whoever's by your bed when you die?

If 80% of the population are apparently so joyous about it, then you can surely let the ones who definitely aren't make that choice?

NOK still gets the final say either way. We really don't have bodily autonomy at all. Therefore, this change is only useful for getting people to talk about donation more and I think that could be achieved in other ways.

Thank you for answering the questions Phil.

These answers are confusing and contradictory.
An opt-in system allowed Elphame and I to have our wishes honoured with our express consent.
And yet, now both Elphame and I are opted out - but I DO wish my NOK to be asked as I have tasked them with the responsibility of conveying my wishes. I DO wish to be a donor, but am objecting to a presumption of consent on ethical grounds and am pressuring for a different route. And I absolutely respect Elphame's need to NOT have her NOK interfere.
What a mess.
I won't be part of a presumed consent system. I won't 'opt-in' to a system which would have presumed my consent anyway and will presume the consent of others.
No more than I would co-operate with a voting system that presumed the votes of people who didn't cast a ballot. Some principles are too important not to defend. Express consent is one.

I'm really concerned. The process for the old and new system seems identical.
Person dies, consent status is unknown, nurse approaches NOK, they approve/object.

Yet an increase in donations is expected. Why? Something must be different.

What explains the expected uplift in donations with the new system if there is no change in that procedure?

A Specialist Nurse will gather information from the hospital notes, from the patient’s GP and will also speak to the family about the mental capacity of the patient prior to their admission. If the information gathered demonstrates that for a significant period before the admission the patient lacked capacity to understand their options in relation to organ donation, then their consent cannot be deemed.

This will be the next step on the slippery slope - who will be the judge?

My next of kin is my sister. We have never had a good relationship and it now consists of a phone call once a year at Christmas. She has no more clue about my mental state than I do hers yet she will be consulted and a decision based partly on her opinion, irrespective of whether I have opted in or out.

SilverySurfer that's why I asked my question, which was about my consent not being respected by my NoK when I'm not around. In other people's cases, the concern is non-consent not being respected, as I think you raise.

Why can't there be a last will and testament for organ donation?I

I was somewhat comforted by the idea I could make my two adult DC my representatives - but I'd still prefer a document, online if necessary for efficiency, to make it legal and clear that my consent is (in my case) positive.

I quite agree AutumnCrow The thing is I am not opposed to organ donation and was registered until recently but I simply cannot agree to this current arrangement and so for the time being I've opted out.

I wonder how many other donors they will potentially lose? I understand organ donations have increased in Wales since the introduction of opt out but as I mentioned in my first post, I can't help wonder if this is due to ignorance and/or apathy. I don't suppose they care as long as they get their body parts.

SilverySurfer

exactly!