A change in the law on organ donation is being considered by Parliament, under the proposed system adults will be presumed organ donors unless they have specifically recorded their decision not to be. The Government has said an ‘opt-out system’ would mean as many as 700 lives a year could be saved. If Parliament approves the new legislation then it could be in place in England by 2020.

The legislation, known as Max’s Law, was introduced last year and will return to the House of Commons in the autumn to be voted on. A similar opt-out system was introduced in Wales in 2015, Scotland plans to introduce a similar scheme and Northern Ireland has also expressed an interest.

A consultation earlier in 2018 which drew 17,000 responses from the public showed that the majority of the public (82 per cent) are in favour of organ donation, however, only around 37 per cent have registered as an organ donor. Currently, for organ donation to take place the next of kin need to give their permission but fewer than half of families give consent as they are unaware of their loved one’s wishes. It is hoped that the introduction of the new law will encourage people to discuss their wishes and make them known before their death and raise awareness of the issue along with organ donations.

The new law will be called ‘Max’s Law’ after 10-year-old Max Johnson, from Cheshire, who was saved by a heart transplant. Max was suffering from dilated cardiomyopathy, a condition in which the heart becomes enlarged and cannot pump blood effectively. As he waited for a suitable donor he pleaded with Prime Minister, Theresa May, to change the organ donation laws.  His story was covered by the Daily Mirror newspaper, which also campaigned for a change in the law. After hearing his story Theresa May wrote to Max to tell him the law would be named after him.

At present there is a shortage of organ donors, in the UK in 2017, 411 people died before the right donor was found, and more than 5,000 people are currently on the waiting list in England. The new system will presume that over 18s in England are in favour of donating their organs when they die, instead of the current system where people opt-in by signing the NHS Organ Donor Register.

Those under the age of 18, those with limited mental capacity and those who have lived in the UK for less than a year prior to death will be exempt from the new law. Anyone who does not wish to donate their organs will be able to opt out via the register and by using an NHS app that launches at the end of the year. The register will also include an option for people to state their faith if it is important to their decision.

However, some critics of the new law are saying the Government is too focused on when to introduce the law and not whether introducing the law is what the public really wishes – or will it actually increase organ donation. Critics say it is important to gather the evidence that such opt-out schemes actually work to increase organ donation before introducing the new law, otherwise people’s trust in the system could be affected and cause fear over who has control of your body when you die – which could actually reduce organ donations.

Spain has the highest level of organ donations and whilst it did introduce an opt-out system the higher rates of organ donation have also been attributed to better education; with efforts to raise public awareness, encourage family discussion, and better support and communication between specialist nurses and bereaved families.

In addition, data has shown that the number of donors in Wales has not increased since an opt-out system was introduced two years ago. So a programme to raise public awareness and increase organ donation through consent, given that many of the public support organ donations, may be a better way forward than a change in the law.

One area that needs to be discussed and clarified for the new law is the next of kin’s wishes and how much control they would have over their loved one’s organs. For example, the new system could include an option where families could override the presumption in favour of donation if they strongly believed their dead relative would not have wanted it. This may be an important condition to allay fears that people might have about losing consent or control over their body or loved one’s body.

So-called ‘opt-out’ laws have been introduced in many other countries as a way to increase potential donors including Austria, Belgium, the Czech Republic, Finland, France, Greece, Hungary, Israel, Italy, Luxembourg, Norway, Poland, Slovenia, Spain, Sweden and Turkey.

Rachel Kayani