Why you should talk to your loved ones about organ donation

From the end of March 2021, the law around organ donation in Scotland will change. The nation will adopt an 'opt-out' system, meaning it will be presumed that you agree to donate your organs when you die unless you've made it known that you don't consent.

Such a system came into effect in England last May and in Wales in 2015. But many people don't realise that, under this 'presumed consent’'system, families are still approached before donation can go ahead.

The weight of such a profound decision is undoubtedly lightened if your loved-ones know in advance whether you want to donate your organs and tissues, so your final wishes can be carried out.

What does the law mean for me?

Before the laws changed, you would have to register if you wanted your organs and body tissues to be used for donation or medical research after your death.

Under the updated system, the default position is that people agree to become donors when they die. It means you have to actively opt out if you don't want to donate, and it applies to all adults except those in certain excluded groups, such as people who lack mental capacity to understand and give or withhold informed consent.

The decision is still very much yours to make and - crucially - your next of kin will be involved in discussions about donating your organs if you die in circumstances where you could potentially become a donor.

Sharing is caring

According to NHS Blood and Transplant (NHSBT) which manages blood donation in England and transplant services UK-wide, the majority (80%) of people say they're willing to donate their organs. And 90% of families report that they would support organ donation if they knew it's what their loved-one would want.

But only 51% would do so if they didn't know their family member's wishes - a stark reminder of how important it is to have open conversations with your family.

Sarah Jones is co-founder of Share Your Wishes, a group of transplant recipients and families and donor families, set up in 2017 to encourage people to become organ donors, and - as the name suggests - to share their wishes with family and friends.

"We realised that even in Wales, where the opt-out law had been brought in, people weren't aware that families will still be asked to support their donation decision," she explains. "We wanted to get that message out there and encourage people to have that conversation, because a lot of families just don't know.

"At the worst time of their lives when their loved-one is lying there and nothing more can be done for them, they're approached and asked if they support organ donation on their loved-one's behalf. They can’t bear to lose that person and trying to make that decision at that point in time is incredibly hard."

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Talk about it

Most of us would certainly want to ease the burden on our family at such a difficult time. And yet, little over a third (39%) of people say they've actually shared whether or not they want to donate their organs.

As well as leaving families with the uncertainty of what to do should the worst happen, the silence around organ donation means that hundreds of opportunities for transplants are missed every year.

NHSBT data show that around 2,900 people are on the waiting list for a new organ as of February 2021. But this figure does not reflect the number of people who actually need a life-saving transplant because of how waiting lists are managed during the COVID-19 pandemic.

In reality, close to 6,000 people in the UK need an organ transplant, and each year around 350 people die waiting because of the shortage of donors.

No room for uncertainty

To help tackle that and save lives, the NHS launched its 'Leave Them Certain' campaign, urging people to have conversations about organ donation. It aims to encourage everyone to talk about their decision - whether they consent to donating or not - by highlighting the impact not knowing a person's wishes has on families in the aftermath of a death.

Upon the campaign's launch, director of organ and tissue donation and transplantation for NHSBT, Anthony Clarkson, said: "People often tell us that they struggle to find the right time or words to talk about organ donation. Unfortunately we see first-hand the impact not knowing has on families, when the first time they consider their loved-one's wishes around organ donation is when they are seriously ill or have already died.

"We want everyone to understand the law around organ donation, and the choices available to them, and highlight the importance of sharing their decision. This is so families can be certain they knew what their loved-one wanted."

A difficult topic

It's not pleasant to think about your own mortality, or about losing someone you love, so it can be hard knowing how to broach the topic. "The British mentality doesn't help because we tend to not want to talk about death," Sarah says. "But it's a conversation that can be had in a couple of minutes over a cup of tea or a glass of wine.

"However you approach it, it's so important that you have these discussions now, just like you would if you were making a will."

There are lots of ways to start the conversation. You can find tips and guidance online or by searching the #LeaveThemCertain hashtag.

"Talk to your friends, talk to your family. Even though the law has changed, you can still sign up to the NHS Organ Donor Register to provide your family with added reassurance," Anthony said in a statement. "Please don't wait. Have the conversation today."