Upon death in the UK, the deceased’s money and property are protected, however their body is not. This raises difficult ethical questions about the power of autonomy after death. Does self-determination weigh appropriately against family veto under the new organ donation laws in England?
The Organ Donation (Deemed Consent) Act 2019 Regulations 2020 came into force on 20 May 2020, introducing a new ‘opt-out’ system, meaning that consent for organ donation will be presumed after death unless stated otherwise. The previous system required individuals to ‘opt-in’ by joining the NHS organ donation register if they wished to donate their organs. The Organ Donation (Deemed Consent) Bill received Royal Assent on 15 March 2019 and makes amendments to the Human Tissue Act 2004. The new bill will bring England in line with Wales who adopted a similar system in 2015 and now have the highest consent rate in the UK.
The ‘opt-out’ system has been introduced as a way to increase the number of organ transplants each year, with the hope that this will spark further conversations about organ donation. This new legislation is known as ‘Max and Keira’s Law’, after Max Johnson, aged nine received a heart transplant from Keria Ball, also aged nine, who passed away when her organs were donated after she died in a car crash in 2017. The aim of the new law is to save lives without having to sign up to a register. Individuals under 18, those that lack the mental capacity to understand the new arrangements and those who have lived in England for less than 12 months will be exempt. A further exception applies if family members can demonstrate that the individual did not want to be a donor.
Previously, if the intention of the deceased regarding organ donation was unknown, family members would be consulted to discuss the decision. In the majority of organ donation refusals, an individual’s views were not known or recorded, and it was often the case that family members then refused organ donation on this basis. As the new law is operating under a ‘soft opt-out’ system, families will continue to be consulted on these decisions as a safeguard. Whilst this allows scope for religious and personal views and ensures organ donation does not go ahead against the wishes of the deceased, families still have an entitlement to withhold organs.
The fact that consent to donation can be overruled by relatives raises difficult ethical questions surrounding autonomy. The difficultly with presumed consent is that the only evidence of an expression of interest is silence. This means that it may actually be easier to allow for a family refusal under the new system due to the absence of opting in. If a patient had not discussed their decision with their family, the family may have concerns about whether that individual wanted to donate. It may also be presented that the individual was unaware that the system has changed and they would have to opt-out if they did not want to donate. Consequently, it may be easier for families to overrule an individual’s consent in an ‘opt-out’ rather than ‘opt-in’ system, as in the latter, evidence of a wish to donate is stronger evidence than presumed consent.
The new legislation creates an almost hybrid like system, where in fact presumed consent is not always conclusive and individuals must continue to actively ‘opt-in’ on the NHS organ donation website, or write their wishes into a will to provide stronger evidence for their decision. Whilst there is no doubt that the new system will enable hundreds of extra transplants each year, it is possible that even more lives could be saved without the caveat that family members have the final say. It may be the case that once the system is well established, a more definitive approach will be adopted to ensure freedom of choice is protected for those wanting to donate, without the fear that family members may override their decision. This could in turn reduce the shortage of organs further and save even more lives.
Families are far more likely to attempt to overrule silent consent that is simply presumed and it is therefore important now more than ever for individuals to share their wishes with their relatives so that they are informed about their decision regarding organ donation.
You can register your decision about organ donation on the NHS organ donation website.
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