Opt-in vs. opt-out: Why are so many willing organ donors unregistered?
How many people would agree to let their organs be donated after their death? According to my survey of more than 100 people, about 92%. That figure is comparable to similar studies undertaken all over the UK.
But how many people have actually signed the NHS organ donor register (ODR)? Of respondents to my survey, only 45%.
And the latest NHS statistics show that only 33% of the UK population have signed the ODR. This ranges from 42% of the Scottish population, to only 26% of Londoners.
That’s a huge disparity between those who are willing in theory, and those who have actually registered.
An average of three people a day die in need of an organ transplant in the UK.
According to Maggie Stratton, Media and PR Manager of NHS Blood and Transplant (NHSBT), registrations are urgently needed: “There are always significantly more people waiting for an organ transplant than there are suitable donors. Only a very small number of people die in circumstances where the organs are even viable for donations – less than 5,000 a year.”
So why the great divide? When so few people actively object, why aren’t more registered?
For a start, lack of clarity about who is eligible. Common responses to the survey were that people thought they had to be British citizens to register – but the only requirement is that you live in the UK.
The vast majority were unfamiliar with the registration process, imagining it to be ‘tricky’ or ‘time-consuming’.
Currently in England, Scotland and Northern Ireland, we have an ‘opt-in’ system: to become an official registered donor, you have to actively register yourself on the NHS ODR.
In the past, you received a physical donor card – which assumed that the doctors treating you would be able to find it, or that you were even carrying it. They also weren’t centrally recorded.
Considering the time factor - in cases of circulatory death (as opposed to brain-stem death), organs have to be removed within a few minutes of the heart stopping – the system was definitely due for an upgrade.
Now, your registration becomes part of a confidential central database which ensures that healthcare professionals know your wishes.
The problem is, most people don’t realise you have to re-register, assuming that their old organ donor card is enough.
In fact, a third of those who responded to the survey hadn’t registered at all, because they weren’t even aware they had to.
And this is when an ‘opt-out’ system is usually mentioned.
The Human Transplantation (Wales) Act of 2013 came into effect in Wales last December, which states that unless a person living in Wales expressly opts out, they will be considered donors. This is known as deemed consent: unless the family objects, the donation will go ahead.
This system would potentially eliminate the quarter of respondents who were planning to register but “hadn’t got round to it yet”.
Stratton emphasised the importance of communication, saying: “It is vital that more people across the UK discuss donation, make their decision known to their loved ones and commit by joining the NHS ODR.”
According to the results, over ¾ would support an ‘opt-out’ system all over the UK.
Almost all respondents to the survey who objected to organ donation claimed they “just don’t like the idea”. This could be just general discomfort – all the data shows that people are far less likely to agree to tissue donation, particularly the corneas, than they are to organs like the kidneys, heart, liver or lungs: the four most commonly transplanted organs.
Finally, Ingrid Fadelli, a psychology major, speculated that registration forces people to confront their own mortality.
“It’s like people who plan their tomb before they die: not many people do it for the same reason.”
She also explained that a ‘social acceptability’ bias could play a part: people might go with the “socially desirable” answer.
“This is a serious topic, and sometimes biases come out because it’s challenging for people to think about.”
But unfortunately, donation needs consideration.
Kate Hooley, spokesperson of Hearts That Matter UK, set up in 2014 to promote organ donation, stressed the need to “shake off the taboo of talking about death”.
“There are 7,000 people in the U.K. waiting on the national transplant register,” she explained.
“The impact this all has on families is huge.”
For Hooley, the waiting game is a personal experience. In 2012, her seven-year-old sister Rachel was diagnosed with heart failure, and almost died waiting for a transplant.
“Organ donation is the greatest gift you can ever give to someone. It gave my family the opportunity to make valuable memories with my sister.”
The importance of registration can be overemphasised, because the next of kin still have the power to overrule it – and they do. Of the small number of people whose deaths leave organs viable for donation, and who are also registered donors, less than half of the families even allow the donation to take place.
“The UK has some of the highest number of family refusals in Europe,” said Hooley. “Around 40% of families asked refuse to let the dead person’s organs be donated.”
Stratton explained: “The most common reason is that they didn’t know what their relative would have wanted.”
This means communication with families is actually more crucial than simple registration. According to the NHS Scotland, families who know the wishes of their loved ones are twice as likely to agree to donation.
"If the person closest to you in life knows that you wanted to be a donor, it will be much easier for them to support your wish to donate at a difficult time. Don’t leave it to chance.”
Can you register as an organ donor? You must be:
At least 12 years old (Scotland), 14 years old (Northern Ireland), or 16 years old (England) – below these ages, you may can only register with parental consent
Considered legally capable of making a decision
Living in the UK
Under the age of 80 (but only for cornea donation)
Under the age of 60 (but only for heart valve / tendon donation)
You are only disqualified on medical grounds if you have:
HIV (except in some circumstances, where the recipient is also HIV positive)
Creutzfeldt-Jakob Disease (CJD – known as human mad cow disease)
Cancer that has spread in the last year
What registration options do I have?
You can:
Register to join the organ donor list
Register a refusal to become an organ donor
Nominate someone to make the decision for you, following your death
Register to withdraw from the decision making, leaving the choice with your next of kin
How do I know if I am a registered donor under the new system?
Even if you carry your old organ donor card, you still need to re-register
Ring the NHSBT Donor Line on 0300 123 23 23 to check your status
How can I register to become a donor?
Fill in a short form at www.organdonation.nhs.uk/regis...
Ask in any hospital
Register your choice with the GP
Phone the free NHS donor line on 0300 123 23 23 – open 24 hours a day, all year
Tick the relevant box when applying for a driver’s licence with the DVLA
Text SAVE to 62323
Write to NHS Organ Donor Register, Freepost RRZK-SHUX-SBCK, NHS Blood and Transplant, Fox Den Road, Stoke Gifford, Bristol BS34 8RR
