Opt out organ donation: a rapid evidence review

6. Conclusions

This report aimed to provide an overview of the evidence about the effectiveness of opt out systems and legislation.

• There is encouraging evidence that as part of a package of measures opt out can lead to increases in organ donation and transplantation

• However there is little robust evidence to suggest that opt out legislation in isolation leads to increased donation and transplantation. The intention in Scotland is to introduce opt out in addition to the wider package of measures in place.

• There is some encouraging evidence from Wales to suggest that opt out systems can positively influence increases in factors that are associated with higher donation, such as public awareness, registration of wishes and family support for donation. However, it is too soon to draw any firm conclusions from this evidence

• It is clear from the evidence the importance of non-legislative measures which can increase organ donation in their own right. This suggests that opt out systems function most effectively as part of a wider package of measures. There are also wider contextual factors that are likely to cause differences between countries regardless of the type of legislation. There are several key non-legislative measures that are likely to support opt out in increasing organ donation:

- Raising public awareness and understanding is crucial. There was some robust evidence to suggest that this public understanding and awareness increases with opt out, this is likely due to wider system changes and publicity campaigns. It is crucial to gain support for the legislation change from the public and also medical staff. Without support, the legislation change is less likely to be effective

- The role of the family and authorisation is also important. The evidence with regards to the impact of opt out on family involvement and authorisation is limited, but evidence from Wales is encouraging. Further evidence is required to firmly establish this. Regardless, families should continue to be encouraged to have conversations about organ donation

- Raising NHS staff awareness, knowledge and confidence will impact on the number of successful organ donations and support an opt out system. Further to this, specialist nurses should also approach the subject early with the family and the evidence suggests that adequate training and awareness is essential in supporting this

- Increased registration and discussion of wishes is important. Whilst opt out presumes consent when no wishes are stated, the evidence suggests that registration remains important as it encourages and gives families the confidence to allow donation to proceed. Therefore registration of wishes should be continued to be promoted and encouraged under an opt out system.

• The evidence indicates that religion and ethnicity are important and the relationship with organ donation is complex. There was little direct evidence identified with regards to opt out. However, the wider evidence regarding organ donation suggests that there could be particular concerns amongst certain religious groups. A targeted approach towards religious and faith groups is likely to be beneficial in advance of implementation. This would increase their understanding of what the change in legislation is and minority ethnic groups would be more likely to have conversations about organ donation. The move to opt out presents an opportunity for further engagement in this area

Overall there are positive indications to suggest that opt out legislation can contribute to increasing deceased donation and transplantation as part of a package of wider measures. A change in legislation is often accompanied by additional factors, such as campaigns and additional training for health staff that can raise understanding and awareness of organ donation. It is clear from the evidence that both context and non-legislative measures are important in the success of organ donation systems.