Let’s discuss the legal changes linked to organ donation

Life-saving changes to legislation have cleared the final hurdle in Parliament and will come into effect next year, bringing about a significant change to the rules regarding organ donation. As of Spring 2020, new laws will come into force across England that will see the introduction of an opt-out or ‘deemed consent’ system whereby all adults in England will be deemed a donor unless otherwise specified.

Also known as the Max and Keira law after a boy who received a heart transplant and the girl who donated it, the change in the rules in England could save up to 700 lives a year by increasing the number of organs available. The new law mirrors the system that already exists in Wales – a system that has seen organ donation consent rates rise to the highest in the UK at 75 per cent.

Why is organ donation law changing?

Two years ago, nine-year-old Max Johnson lay in a hospital bed in Newcastle, his condition rapidly deteriorating as a result of heart failure. At the same time, nine-year-old Keira Ball was involved in a devastating car accident with her mum and brother. After doctors in Bristol confirmed they could not save her life, Keira’s father made the decision to donate her organs to those in need as he believed this is what his daughter would have wanted.

Keira’s organs were used to save four lives, among them Max Johnson, then also aged nine, who received her heart. The operation was a success and Max and Keira’s story prompted the prime minister to introduce a system of presumed consent for organ donation in England.

Max, now 11, is just one of many who have found themselves on the long list of names of patients awaiting a transplant. Every day, it’s estimated that three patients in need of a transplant die due to the lack of available organs. While consent rates have risen over the years and the number of people alive today thanks to transplants continues to grow, England still lags behind most European countries in rates of consent and donation is still a relatively rare event. Meanwhile, the waiting list for transplants climbs at an exponential rate.

As of March 2019, there are 6081 men, women and children on the national transplant waiting list, and while 80 per cent of adults in England say they would definitely donate their organs or at least consider being a donor, only 37 per cet have signed up to donate their organs upon death. At present, patients on the waiting list rely on the opt-in system, which means anyone who wishes to donate their organs after death must sign up to the NHS Organ Donor Register.

What is the opt-out system?

As of next year, a lack of recorded decision on the NHS Organ Donor Register will be taken as consent for organ donation unless you explicitly remove yourself from the register. If you do not want to be an organ donor, you must register a ‘refuse to donate’ decision, also known as opting out. There are, of course, exclusions to the rule. The new law will not apply to individuals under the age of 18 as well as those who lack mental capacity to understand the new arrangement and people who have lived in England for less than 12 months.

The rule change has been tipped by government ministers to be transformational. Last year, 466 patients died in need of an organ and a further 881 were removed from the transplant waiting list. Many of them would have died shortly afterwards. While personal views and religious beliefs may account for a small part of the population who are yet to register, the reality is that many people put off the sign-up process simply because they are too busy to make the effort to fill in the form. By changing the voluntary opt-in process to one of deemed consent, the hope is that the number of eligible donors will soar as those strictly opposed are more likely to ensure they are excluded than those who are willing but too idle to sign up.

The question is, will the opt-out system work? If we look at the impact such legislation has had elsewhere, the answer seems to be a resounding ’yes’. In fact, Spain is held up as the biggest example of what an opt-out system can do, with 46.9 donors per million people compared to 24.4 per million in England. While more funding to the NHS is needed to support the rule change in the UK, the new law is a first and critical step in saving the lives of hundreds across the country every day.