What can the Government do to ensure a successful implementation of the ‘opt-out’ organ donation system?

Organ and tissue donation is the gift of life to others, an altruistic act that has been celebrated during Organ Donation Week. Our recent Ipsos Global Advisor survey showed that 67% of Britons would allow their organs to be removed in the case of sudden death in order to help others in need. Furthermore, NHS Blood and Transplant data has shown even higher rates of approval, with 80% of people in England stating they are willing to or would consider donating their organs.  

However, while most people say they would be willing to donate their organs after death, comparatively few record their decision on the Organ Donor Register (ODR). Statistics from NHS Blood and Transplant demonstrate the importance and positive impact of being registered on the ODR, given the decision will fall to the family if a patient’s wishes to donate are unknown. Less than half of families (48%) give their consent for organ donation to proceed in such circumstances.

These statistics highlight the Government’s rationale for the recently announced ‘opt-out’ system, referred to as ‘Max’s Law’, whereby individuals will be presumed to be an organ donor after their death unless they have specifically recorded a decision on the ODR refusing to donate. This proposed legislation builds on similar changes introduced in Wales in December 2015. Given the high approval rates of organ donation, the Government believe an opt-out system could result in 700 extra transplants a year, transforming 700 lives.  

To develop this legislation the Government launched a consultation, in December last year, aiming to gather views on the opt-out system. Alongside this wider consultation, NHS Blood and Transplant commissioned Ipsos to undertake research with groups less likely to engage in the formal consultation process, including a number of Black and Asian Minority Ethnic (BAME) groups and faith groups. Additionally, parents and temporary residents were included because of the interest in how the proposed law will apply to children, visitors and temporary residents. This research highlighted issues around public misconceptions and the importance of a wide-spread awareness campaign.

Our research demonstrates that people generally view the move to an opt-out system as a positive step, with regards to increasing the number of donors and shifting responsibility to the minority who are not in favour of donation. However, certain groups had pre-existing misconceptions about both organ donation and the proposed opt-out process, which the Government arguably has a responsibility to challenge.

Around the organ donation process for example, some believed the body would be rushed away from grieving families or that the body would not be treated with dignity. Within Black African and Black Afro-Caribbean groups in particular, there was a feeling that doctors are less likely to help you if you have decided to donate your organs. These misconceptions around the organ donation process may explain the general distrust of the Government in some groups, with people raising questions over the Government’s true motivations for moving to an opt-out system. There were also participants, across most groups, who felt the Government implementing an opt-out system would be taking away their choice.

This links to concerns expressed by some participants that the individuals’ decision under deemed consent would be less clear, in terms of whether they would have wanted to donate their organs or not. This ‘grey area’ around consent created by the opt-out system may place more onus on the family and healthcare providers. Our previous research for King’s College London demonstrated the majority of the British public believe the wishes of those who want to donate their organs after death should be followed in the current system, even where the family object. However, responses were more mixed where an adult had not made their preference clear. Incidentally a recent study by Queen Mary University of London suggests an opt-out system would unlikely increase the number of organ donations as family members would be more likely to veto a presumed consent.

This all highlights the importance of promoting discussion among loved ones, so no family members are ‘left in the dark’. In our research for NHS Blood and Transplant some participants recognised that the opt-out system itself will be a means for encouraging people to discuss their organ donation wishes with their family, allowing family members to feel confident they are acting in accordance with the wishes of their loved ones. This is particularly important given that death is such an emotional time for a family to have to make that choice on the individual’s behalf. However, some participants also acknowledged that organ donation is a morbid subject, and one that people are typically uncomfortable discussing. Therefore, the Government have a potentially important role in normalising organ donation and death as a topic, requiring almost cultural behaviour change?

Some participants particularly stressed the importance of families being more involved in decisions in the opt-out system, due to concerns that individuals may not have been aware of the ‘automatic opt-in’. They may have been undecided (and so did nothing), or may have not got around to opting-out before their death. For the launch of the opt-out system to be successful, and for organ donation to increase, a recommendation participants made in our research for NHS Blood and Transplant was for the Government to conduct a wide reaching public information campaign as far ahead from when the law is changed as possible. This could potentially focus on the new regulations, the vital need for more organs, the need to discuss organ donation with family members, and the possibility to formally opt-out if they do not wish to donate their organs. This would likely need to equate to the scale of campaigns such as the Smokefree England campaign, in advance of the introduction of the smoking ban, or the five-a-day healthy eating dietary campaign. Participants in our research often suggested an impactful tagline such as “You’re in, unless you opt out” which could be central to such a campaign.

The implementation of this campaign will be extremely important, and could potentially tackle public misperceptions, ensure widespread awareness of the opt-out system and open a dialogue. Ultimately, there is a need to normalise discussions around organ donation, so people feel comfortable making their loved ones know about their decision to donate, or not to donate. But in addition to this, the Government has a moral responsibility to ensure that both individuals and their families are able to make an informed choice.