Understanding the new organ donation law

Organ donation and the opt-out system

Amidst the chaos and distraction of Coronavirus, there was a change in the law in the UK on May 20th 2020 and this concerns organ donation.

It used to be the presumption that you had to opt in to donate any organs and on the 20th May 2020, the law changed that presumption. Now, everyone will be presumed to be an organ donor subject to some automatic exclusions unless they take active steps to opt out.

Why the change?

The Organ Donation Act has changed the law in England with the express aim of finding more organs to donate to those waiting for a transplant, usually around on average, 6,000 people. It will help prevent people from dying whilst they wait for a transplant, currently averaging at around three people per day on the transplant list due to a lack of donors.

The Organ Donation Act is also known anecdotally as ‘Max and Keira’s’ law after a girl who donated her heart and a boy called Max who received it.

Who is excluded under the new statute?

There are certain categories of people from whom this assumption or presumption will not automatically apply and they include:

• Children under 18.
• People who lack mental capacity for a significant period before their death.
• Those who have not been resident in the UK for at least 12 months prior to their death.

What will be the new normal?

There will continue to be strict safeguards and protocols in place for organ donation. Specialist nurses will, as before, discuss donation with the immediate family; whereas this might have only occurred if the individual carried a donor card or had previously made their wishes known, now this will be done with many more families other than those who form part of the exempted group.

The government and the medical profession feel that organ donation is far more widely supported than the current opt-in system might suggest; surveys indicate that 80% of people support organ donation but the opt-in rate is only 38%. It can just be something that many people just don’t get round to talking about or making a formal decision on.

Those tricky conversations

Talking about organ donation is sometimes just another one of those taboo death conversations like wills and funerals… as if death is never going to happen to you!

Some people, whether it’s for reasons relating to religion or others, aren’t comfortable with the idea of organ donation. However other people derive great comfort from knowing that their loved one has helped someone in their death, and that they could even have saved someone else’s life.

Families are always consulted

Even with the new opt out system, your family will still be consulted and there are a number of reasons for this:

• Even if consent is presumed, consultation is a matter of respect and consideration to the family before the death of their loved one.
• The family can provide key information about the patient’s wishes which could have changed since they recorded information on the Organ Donor Register.
• Family members can provide information about their loved one’s medical history and any recent travel which can help the transplant team make an appropriate decision. The safety of transplant is just as essential as the patient’s wishes.

Nominated representatives

If you can’t decide or don’t want to have to decide then you can nominate up to two representatives to make that decision on your behalf when the time comes. Sometimes people do this if they are concerned that their family won’t support their decision. If you die in circumstances where organ donation is feasible then your Appointed Representatives rather than your family will be approached about your decision. To appoint Representatives, they are required to sign a nomination form in the presence of a witness – this can be done online on the Organ Donor Register or by post for those without access to the internet.

Key facts about organ donation

Whatever your preferences, many people are unsuitable to be considered as organ donors, in fact, only one in one hundred people are usually suitable to be donors. Typically organ donors are those who die in a hospital intensive care unit or Accident and Emergency Department. Specialist healthcare professionals make the decision whether or not a person’s organs and tissue are suitable for donation. Just because everyone is assumed to opt in under the new legislation does not mean that the transplant teams will be overwhelmed with donors, it will just make a very small pool slightly larger.

• There is no upper age limit on being an organ donor.
• Decisions on the suitability of organs are made based on the individual’s medical, social and travel history.
• You cannot be an organ donor if you die with a proven Covid-19 diagnosis whether Covid-19 caused the death or, was instrumental in it and there were other underlying health conditions.
• Other diseases which rule out organ donation include active cancer and Ebola. For a cancer to be deemed inactive, there usually has to be three clear years in the patient’s history but every case is looked at individually.
• Blood tests are taken from potential organ donors and screened to confirm eligibility and freedom from disease.
• There is no change to the overriding and key duty of care for healthcare professionals and medical teams to save life above all other requirements.
• Even if someone is an active organ donor, what is to be removed is still agreed with loved ones and next of kin – it is not a free for all. So, there is control over which body parts are taken and which are left. Many people who support organ donation will still not agree to all of the possible body parts being removed, just some.
• There is no deadline to record your decision on the Organ Donor Register despite rumours circulating on social media – these are fake news.
• The nurses from the specialist transplant team will always respect faith and cultural beliefs – there is more information about how faith can impact on organ donation on the Organ Donor Register.
• The operation to remove organs takes place immediately after death but then the process surrounding the body is exactly the same as if there had been no surgery. Relatives are allowed to spend time with their loved ones and a funeral is carried out in the normal way.
• Even if someone has opted in on the Organ Donor Register or consent is presumed in the absence of anything else in the new opt out system, organ donation is still discussed with the family and next of kin in case they are aware of more recent decisions than that recorded on the Register.

And if you don’t want to donate your organs?

Then you can record this on the NHS Organ Donation Register. The Register is there to make clear your decision whatever it is. The choice is still yours but you just need to record it and talk about it rather than keeping quiet about it. Register your decision either way on the NHS Organ Donor Register and tell your immediate family what you have done. And soon you’ll be able to add your wishes to Aura page, a central location to record all of your decisions surrounding your death and refer loved ones to where they can find more information.

By being clear about organ donation, it makes things easier for your family at a very difficult time; they are not faced with having to grapple with a deeply personal decision about something which you may never have talked about in life.