Flipping the script on organ donation

Written by Science, Science & Tech

This Autumn, subject to approval at the House of Commons, rules regarding organ donation are set to undergo a major upheaval across England.

Known as Max’s Law – named after Max Johnson, a nine-year old from Winsford who spent ten months at the Freeman Hospital in Newcastle after being diagnosed with dilated cardiomyopathy before receiving a heart transplant that turned his life for the better – this law is set to come into effect from spring 2020 if passed.

Under the current system, people are required to ”opt-in” – meaning that they have to give their consent to have their organs donated after their death, and until they do so, they are presumed not to have consented to it. More often than not, the decision to donate or not donate organs falls upon the shoulders of grieving families of those who have just passed away and it does not always result in an agreement.

A potential unwillingness of relatives under normal circumstances has not been an issue. An overwhelming majority of the British public are in favour of organ donation, according to The Department of Health and Social Care. However, under conditions of duress – such as grief – families seem less likely to agree to organ donation. Familial refusal to give consent is, at the moment, the “biggest obstacle to donation” according to the NHS. Nearly 47% of families refuse to donate organs if the person concerned is not a registered organ donor.

Max’s Law proposes to change the system to an “opt-out” system. This will mean that every patient (barring children under 18, individuals who lack the mental capacity to understand the changes and people who have not lived in England for at least 12 months before their death) within the UK is presumed to have given consent to organ donation unless they opt out of the system.

Consider this. As of 4 October 2018, there are a total of 6135 people on the transplant list in the UK with 162 under the age of 18. The number of transplants performed per year, however, amounts to only half that number. The new law has the potential to save “700 more lives every year” according to Jackie Doyle-Price, Parliamentary Under Secretary of State for Mental Health and Inequalities. Even though organ donations have increased – with a record 170 in January 2018 alone – Doyle-Price is cautious to add that “this new system alone is not a magic bullet. We need to address myths and misconceptions around donation, and we will only do this by having informed debate and dialogue, which I hope will be fostered by these proposals.”

While many doctors and professionals in the medical field have welcomed this, some are not so optimistic. Researchers from Queen Mary University of London found that under opt-out systems, families were not necessarily sure of their relative’s wishes about organ donation. The study examined the opinions of more than 1,200 Americans and Europeans on organ donations – with participants from countries which had both opt-in and opt-out systems and was published in The Journal of Experimental Psychology: Applied.

The problem arises when families are given a clause as part of the opt-out system to veto the donation. And with the NHS citing familial barriers as the main reason for low organ donation numbers, how much of a solution Max’s Law would be remains something left to speculation.

They also found that people were more likely to agree to donation in an opt-in system where the wishes of the relatives have been expressed openly (for example through registering for organ donation). They wrote: “When participants know that an individual has registered their decision to donate through some overt signal (i.e. under a mandated choice or a default opt-in system) this is likely perceived as a less ambiguous signal of a preference to donate.”

While Max’s Law may not be the be-all, end-all solution to the organ donation problem in England, it has brought the issue to everybody’s attention and like Doyle- Price said, has helped generate discussion on the subject which could, in the future, lead to further constructive measures being taken.

Last modified: 15th October 2018

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