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Organ Donation Week: The vital conversation we all need to have with our families

There’s still a lot of confusion and misconceptions around organ donation.

Organ donation may have changed in England and Scotland last year to an opt-out system – meaning you’ll be considered an organ donor after your death, unless you’ve specifically opted not to be – but it’s still as important as ever to indicate your wishes, and let your family know where you stand.

Only approximately 42% of the UK population are on the NHS Organ Donor Register – which shows that you want your organs and tissue to be donated to another person in need in the event of your death. The law was changed in England and Scotland in May 2020 – following Wales – due to the huge shortage in donors. In 2019, 408 patients died on the transplant waiting list in the UK.

Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transplant, says the main reason people give for not being on the register is that they haven’t got around to it. Yet most people would say yes to receiving an organ if they needed it.

If you haven’t joined, or you’re not sure what to do, here’s what you need to know…

In an opt-out system, your family will always be consulted

If you haven’t registered a decision and you die in England, Wales or Scotland under the opt-out system, then it will be considered that you were willing to donate – unless you tell family otherwise or come under the one of the excluded groups.

Clarkson says: “Many people don’t realise that while organ donation has moved to an ‘opt out’ system, families will still be consulted before organ donation goes ahead. This means it is still as important as ever to ensure your family know your organ donation decision.

“Nine out of 10 families will support their loved one’s decision, if they already know what their loved one wanted.”

So while officially being on the register is important if you believe in organ donation, as it gives a strong indication of what you want, your family may still have the final decision. Ethically, if a family was strongly opposed, donation wouldn’t go ahead – even in the case of a registered donor.

You can make things easier for family by discussing it now

It seems like a morbid subject but it’s vital your family knows where you stand, so it’s easy for them to give a ‘yes’ or ‘no’, at an already traumatic time, in the event of your death.

Families are far more likely to support donation when they know what their loved one wanted.

“Not knowing what their relative would have wanted can add extra worry and anxiety for family members already dealing with the loss of their loved one,” says Clarkson.

“Our top tip is don’t wait or put off the conversation. It doesn’t have to be too formal or serious, some people might use joining the register as a prompt to tell their friends and family, but the chat can take place anywhere and at anytime, after watching a news story about organ donation, when driving together in the car or just sitting on the sofa having a chat.”

Age and health conditions don’t matter

One misconception is that people need to be in perfect health now to be a future donor.

“It is important for everyone to know that age and health conditions do not prevent someone from joining the register,” says Clarkson. “If, in the event of your death, organ donation becomes a possibility, a full medical assessment and history will be taken to decide if donation can go ahead. People have donated in their 60s, 70s, 80s and even 90s!”

Doctors would never make a decision based on your organ donor status

Clarkson notes that some people (wrongly) worry that their life wouldn’t be saved if their organs are needed by somebody else – but that’s a dangerous misconception.

“Doctors will always prioritise saving the life of the patient in front of them, and the fact someone has signed the NHS Organ Donor Register will make no difference whatsoever to their dedication to saving your life,” he says. “The register is not checked until doctors and the family, have agreed that further treatment will be futile. The potential donor’s family will always be consulted before organ donation goes ahead.”

What if you and your relatives disagree?

If people are concerned that their family are likely to go against their decision, then there is an option to appoint a nominated representative who would be consulted instead of next of kin.

To find out more, and register your organ donation decision, visit: organdonation.nhs.uk, call 0300 123 23 23 or check your preferences via the NHS app.

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