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

[MumsnetGuestPosts]

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

[teyem]

We've moved from a system of informed consent to a system of presumed consent. Do you think that there should be more information made easily available about the nuts and bolts of donating, about the process of when and how things happen, so that people can opt-out if that doesn't match their understanding of what is involved?

[DontLookBackIntoTheSun]

If I opt out, can my family still decide to donate my organs? I want my family to be able to give my organs freely without the presumption of consent.

[NopeNi]

Some questions from me (based on the other thread that you said inspired this one):

• How will you be sure that everyone understands this? How do you categorise people as not having capacity? What if they just don't read or speak fluent English?

• What if someone doesn't have a family to check with? Or if they're unidentified? Do you just assume consent?

• What if someone wants to opt out so that their family aren't pressured at a difficult time, but they don't really mind? Conversely what if a family wants to override someone's decision? Will you be asking anyway?

• On that note, people have written about how traumatic it's been to feel pressured into this, and to watch their loved ones being kept medically alive for surgery. What will you be doing to make sure that staff don't pressure people, and support them through a difficult time when they have made the tough choice?

• Will you discriminate against people who opt out (whether for themselves or family members)? If not, how will you ensure this, and protect their information too?

[Walkingdeadfangirl]

It doesn't really sound like presumed consent, it sounds more like no presumption made either way.

My question is: if a single adult has signed the consent register but one of their parents disagrees and one agrees with donation, what happens?

[SilverySurfer]

Presumed consent is a step too far for me so despite having had a donor card since inception, I have now opted out. I believe it's sufficiently important that there should have been a referendum before being made law.

People will still have a choice whether or not they want to donate

Then perhaps you could explain why this change is necessary or are you relying on people's ignorance or apathy so you get more body parts?

[misscockerspaniel]

What if you happy to donate everything except for your reproductive system (uterus etc)? I couldn't see this option listed on the opt-out list.

[NoCauseRebel]

So, what is being done to actually encourage dialogue between families to ensure that someone’s wishes are carried out? Because that is the issue really isn’t it? In countries where donations have increased this hasn’t happened because of opt out, it’s happened because of A, greater awareness of the need to discuss your wishes before the time of your untimely death, and B, because of the work done by the donor coordinators in order that the family are approached in the most sensitive manner possible when their grief is at their highest and it may be hard for them to make such a decision. So what action is being taken to bring this dialogue into play to ensure the increase of donations?

I am in agreement with organ donation and am myself likely to need a heart transplant in the future. And I have had the conversation with my family following a serious illness in 2016 where I ended up asking a family member afterwards “so erm, did the prospect of organ donation come up at any stage?” When they thought I might not make it. However, while I am aware that at the moment the law is such that the next of kin still have the overriding say either way, I believe that any law is far more easily changed once it comes into force, and this sits very uncomfortably with me. So in conjunction with conversations with my family I will be opting out, but I still know that my organs will be donated but in conjunction with the decisions of those who know me and my wishes rather than the government.

Without these conversations the law is pointless. So what are you doing about them?

As you know, around 48% of next of kin still override someone’s wish to donate even if they are registered, so without the push to encourage dialogue this will still continue to happen and donations will decrease not increase.

[Bowlofbabelfish]

I have a question about blood donation.

what methods are in place to make sure the SEX of a blood donor or recipient is known and recorded correctly in order to avoid sex based adverse effects (given that, for example, death rates are higher in men who receive blood from women who have ever been pregnant and that such women’s blood can potentially contain various antibodies)?

Are the team aware of the vastly higher HIV rates in transwomen? How is this reconciled with restrictions on blood donation from men who have sex with men if these donors are recorded as women - no true sexual history can be obtained if sex is recorded incorrectly. Thus is it true that a high risk population is donating with fewer restrictions, putting the public at risk simply by declaring gender? If so how can this be justified?

I would appreciate an answer other than ‘we screen all blood’ since I know someone whose critically ill baby has just been told the blood they received is bacterially contaminated. No screening is 100% - risk categories are important.

Thanks.

[Barracker]

I was one of the 38% who was always opted IN to the explicit consent system, but who has subsequently opted OUT with the forthcoming 'presumed consent' system, because I am fundamentally opposed to 'presumed consent' as a principle.

My family understand that I am very much still willing to donate my organs (not reproductive) but that EXPLICIT consent must be obtained.

I was saddened that the law changed this way and believe that consent which is presumed (and which is NOT therefore consent at all) will be a precedent principle that will now be abused in other situations.

If consent is not freely, knowledgeably and enthusiastically given, then it doesn't exist at all.

I wish there had been a better campaign to target the 42% of people who claimed they wished to be donors but didn't ever opt in.

Overturning explicit consent for 100% of people to sweep up that 42% was ethically unjustifiable, and I fear that consent will be 'presumed' in many other scenarios based upon 'its for your own good, or someone else's' reasoning.

So, I fervently hope the donation service continue to ask relatives of opted-out people.
My opt-out is from a principle of presumed consent. It isn't from donating my organs.

[ILuvBirdsEye]

Men can give blood every 12 weeks and women can give blood every 16 weeks -what is the reason behind this?

On the blood donation website it says:
Back in 2012, we amended our IT systems to allow us to invite men to donate every 12 weeks. The trouble was that the system couldn’t distinguish between male and female donors and so women were able to book appointments online with the same frequency.

Your systems now record Gender NOT Sex (see screenshot) so my question is how do you know who to allow to donate every 12 weeks and who needs to wait for 16 weeks?

[SpeakUpXXWomen]

Thank you for taking the time to answer questions here.

My Scotland based opt in form asks for gender not sex. I am unable to answer it and find it highly offensive since I am gender critical and favour scientific fact. The opt in form cannot be submitted without ticking a vague nonsense gender option. Surely sex should be the important question here?

Why is there no question regarding sex?

Why is an offensive gender question being forced?

Religion is an optional box on this form btw so you are not asking me to confirm my belief system, except that by then forcing a gender question you are!

Sex matters.

Please see that our extremely important medical information reflects fact and stop force feeding us ideology we want no part of.

[U2HasTheEdge]

If I opt out, can my family still decide to donate my organs? I want my family to be able to give my organs freely without the presumption of consent.

I would like to know this too.

If the decision still lies solely with NOK then I can't see the point. I also do not like that it presumes consent.

[teyem]

At the risk of labouring my first point, I hope that you do look at the other thread, as you said you have, and absorb the full breadth of misinformation about the realities of organ donation and consider how the gap between those 80% of people who are in favour of organ donation generally and the 38% of people who have opted in might be filled with lots of people who cannot be understood to have made an informed choice not to opt out.

[Grace212]

I'd like to echo a pp point "Then perhaps you could explain why this change is necessary or are you relying on people's ignorance or apathy so you get more body parts?"

to me this feels like, if you don't opt out, then if a family member says "yes, you can have her body parts", you are relying on ignorance and apathy. You can't know if the person had that conversation or if the family member is the one who is pro-donation.

Presumed consent a step too far for me.

[NopeNi]

Yes, I cannot fathom why (having opted out) you'd ask someone's relatives AGAIN if they didn't mind after all. It's not their choice!

[Elphame]

If an individual opts out specifically because they do not want to donate will the NOK be able to over ride this opt out?

[ColeHawlins]

Mr Walton, what kind of formal ethical scrutiny has this change of policy been subjected to and over what time period? Ditto, detailed public attitudinal research?

[PhilWalton]

Hi everyone,

Very pleased to have been invited as a guest onto this platform. I'm Phil and for the last 10 years i've worked for NHSBT (the organ donation service). Most of my work has been done in Wales where we successfully implemented the Opt-out system in 2015. My role now is to make sure NHSBT's workforce is ready to support families under a new legislation which will be implemented from Spring 2020.

Thanks for all the questions so far, i will do my very best to answer as many as I can before 7pm.

[PhilWalton]

Absolutely. The new system of consent will not be in place for at least a year. We will be using this time to do a public awareness campaign about the change in the law. The campaign will focus on the fact that the decision to donate rests with the individual. It will ask people to make a decision and tell their family what they want to happen.

In NHS Blood and Transplant, we have always done as much as we can to help demystify the process of organ donation and raise awareness. Our website contains lots of information and we regularly share videos and stories from donor families and specialist nurses on our social media pages and in the national and local press. Our contact centre team are trained and available to answer questions over the phone and online. Media stories, TV documentaries – like the recent Hospital series – have closely followed people during the donation and transplant process. There is also a network of trained ambassadors, charities, volunteers and hospital organ donation committees who we work with to help spread awareness across the country.

@teyem

We've moved from a system of informed consent to a system of presumed consent. Do you think that there should be more information made easily available about the nuts and bolts of donating, about the process of when and how things happen, so that people can opt-out if that doesn't match their understanding of what is involved?

[PhilWalton]

@DontLookBackIntoTheSun

If I opt out, can my family still decide to donate my organs? I want my family to be able to give my organs freely without the presumption of consent.

We always approach the family of a potential donor to determine their last known wishes about organ donation. If you agree with organ donation, then one way to show your support is to register your decision to ‘opt in’ and to tell your family. In this way, you are actively stating your decision and not relying on presumed consent but leaving no room for confusion or doubt.

If you had opted out, then the specialist nurse will approach the family with that information and clarify with them that it is your last known decision. At that stage, your family could offer additional information but this could cause additional stress or confusion at a traumatic time. Whatever you want to happen – opt in or opt out – record that decision on the NHS Organ Donor Register and tell your family.

Deemed (presumed) consent does not / cannot apply if you have already opted in. If you want someone you make a decision for you, you need to nominate a representative and not opt-out.

[PhilWalton]

@NopeNi

Some questions from me (based on the other thread that you said inspired this one):

• How will you be sure that everyone understands this? How do you categorise people as not having capacity? What if they just don't read or speak fluent English?
  

• What if someone doesn't have a family to check with? Or if they're unidentified? Do you just assume consent?
  

• What if someone wants to opt out so that their family aren't pressured at a difficult time, but they don't really mind? Conversely what if a family wants to override someone's decision? Will you be asking anyway?
  

• On that note, people have written about how traumatic it's been to feel pressured into this, and to watch their loved ones being kept medically alive for surgery. What will you be doing to make sure that staff don't pressure people, and support them through a difficult time when they have made the tough choice?
  

• Will you discriminate against people who opt out (whether for themselves or family members)? If not, how will you ensure this, and protect their information too?

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.
If a patient has registered or made known a donation decision in life, while they had capacity to understand the legislation, this decision is valid even if they subsequently go on to lose mental capacity. The Human Tissue Authority will be developing Codes of Practice for clinicians and nurses to follow, which will clarify how the process will work within the new legislation. In Wales, a ‘significant period’ is defined as 12 months before death.

It is important to us that we create materials for different groups of people. During the course of the year, before the new system is introduced, we will develop information in a range of different formats and languages and try our best to reach people with information in a format that’s appropriate for them.

We also hope that relevant organisations that support people with learning disabilities, sight or hearing problems which could affect a person’s ability to read, access or understand information about organ donation and the law change, will work with us to ensure our materials will be effective and help us to share our information with those who need it. We are in the process of contacting such organisations.

As always, by approaching and speaking with the family, we aim to build an understanding of the individual and the family, and their organ donation views and whether the family believes that they were able to understand and make a decision about donation.

We have access to translation services 24/7, which we use in situations where the family needs an interpreter. This means that we can have a proper conversation with all families at the time when donation is a possibility and ensures we know what their loved one would have wanted to happen.

If organ donation is a possibility, all measures to find family members will be explored. However, if this proves to be unsuccessful or there is no family at all, a friend of long standing can be consulted. The Human Tissue Authority have set out Codes of Practice, which includes a hierarchy of those who should be approached regarding organ donation. This starts with family, then includes friends, care workers etc who will have known the potential donor and can speak on their behalf.

We would not go ahead with organ donation if the NHS cannot contact someone who knew the donor well. This is partly because we would not be able to say with confidence that they had not made a decision to opt out. We also have a duty to consider the safety of any organs for transplant. The family can help us determine decisions about donation, but also about medical and lifestyle history, so that we know that any donated organs would be safe to transplant.

Regardless of an individual’s decision there would never be any pressure put upon the grieving family. All organ donation conversations are approached sensitively and the specialist nurse involved will aim to understand both the individual and the family’s beliefs and point of view.
The main thing you can do to make that time easier for your family is to have the conversation about organ donation and ensure your relatives are fully aware of your decision.

The family is always approached if donation is a possibility. Family members are sensitively supported to honour any decision made by their relative, thereby fulfilling their relative’s end of life wishes. There is no legal right to veto or go against a decision. Families can provide information that demonstrates a last known decision and organ donation would never go ahead if the family don’t believe that it is what their loved one would have wanted.

Any doctor’s primary concern is that their patient receives the highest possible standard of care. Our team of specialist nurses for organ donation are highly trained and skilled at sensitively supporting families. They take great care to avoid families feeling any sense of pressure during the donation process. While some people do struggle with the length of time prior to donation, others tell us that it allows them precious extra time with their loved one. The specialist nurse/s remain a constant point of contact for a family during donation and the same nurse/s will continue to available to provide support after the donation. Many families will keep in contact with the nurse who was there to support them.

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 is the NHS Organ Donor Register accessed. Until this point, none of the medical team involved in the treatment will be aware of the patient’s organ donation decision and it would never influence or change the decisions around any treatment given.

The NHS Organ Donor Register is a medical record and NHS Blood and Transplant is responsible for keeping that information secure and in accordance with data protection laws

[Grace212]

Phil "If you had opted out, then the specialist nurse will approach the family with that information and clarify with them that it is your last known decision"

I think that's still poor - the nurse shouldn't approach the family at all. If that's my last recorded decision, then that decision stands, and my family should not have someone asking about it.

[PhilWalton]

@Walkingdeadfangirl

It doesn't really sound like presumed consent, it sounds more like no presumption made either way.

My question is: if a single adult has signed the consent register but one of their parents disagrees and one agrees with donation, what happens?

The change in law shifts the focus of the discussion on to whether the individual would have wanted to donate. The marketing campaign will be raising awareness of this and asking people to make their own decisions, and tell their family what they want, so that they can support that decision if the potential for donation arises. If there is a situation where there are conflicting views within a family, the SNOD will work with the family to help them reach a decision. However, the point remains that the last known decision of the deceased takes primacy and their end of life wishes should be followed.

[PhilWalton]

@SilverySurfer

Presumed consent is a step too far for me so despite having had a donor card since inception, I have now opted out. I believe it's sufficiently important that there should have been a referendum before being made law.

People will still have a choice whether or not they want to donate

Then perhaps you could explain why this change is necessary or are you relying on people's ignorance or apathy so you get more body parts?

We know that currently 80% of people say that they support organ donation, yet only 38% have joined the NHS Organ Donor Register to state that they would be prepared to donate their organs. When asked many people answer that they ‘haven’t got round to it’. This change in law shifts the balance of presumption, to better reflect what most people want to happen.

Families will still be approached and given the opportunity to provide any information that demonstrates their loved one’s decision about organ donation, and this will always be respected. If a family feels unable to support donation, then it wouldn’t go ahead.
When the Opt Out system was introduced in Wales in 2015, people followed with close interest to see what the impact would be. At the end of 2018, the reports showed that Wales now has the highest organ donation consent rates of any of the UK countries. The Welsh consent rate has risen from 58% to 73% and stepped ahead of other countries by some margin. We hope that in time we will see the same impact in England.