Plain language summaries of research

This is a plain language summary of an original research article. The views expressed are those of the author(s) at the time of publication.

About the law change in England

Organ donation is the supply of an organ or tissue to allow a lifechanging transplant to be performed and often takes place after someone has died. Low rates of consent to this type of organ donation have been described as the biggest barrier to making more organs available for transplants in the UK.

In 2020, a new 'opt-out' system of consent to organ donation was introduced in England to address this issue. This means that all adults aged over 18 years are considered to have consented to organ donation unless they decide to opt-out. The law is 'soft' as families can still, in practice, override the decision a deceased person made when they were alive.

The goals of this law change were to increase the number of people who donate organs after their death and to increase the number of transplants that happen because of this.

Researchers wanted to find out about the effects following the law change, including if it led to more organ donations and whether if affected how families felt about organ donation.

 

How did researchers study the impact of the new law?

Researchers analysed data from lots of different sources to understand how the law change affected organ donation.

They:

• Reviewed Parliamentary debates, media articles and NHS data
• Conducted surveys and interviews with the public, bereaved family members who were approached about organ donation after their relative died, and healthcare professionals
• Compared the UK's system with Spain's consent processes and documents

They looked at information from the period before the law changed and compared it with data from after the change. The study examined several important factors including:

• The number of people who registered on the organ donor register
• The impact on consent rates
• Public attitudes to organ donation
• The impact on families of potential donors
• How healthcare professionals felt about implementing the new system

 

What were the main findings?

The law change has yet to lead to the increase in organ donations that some had hoped for. Key findings included: 

1. Parliamentary debates

While many other countries with an opt-out system have been seen as successful (such as Spain) there were misunderstandings in the debates about how organ donation works in the UK, and therefore how the legislation would work in practice.

2. Consent rates

The effect of the COVID-19 pandemic makes it difficult to interpret changes in consent rates, but there is no evidence so far that the law change in England has boosted the consent rate as intended.

3. Public awareness

Most media campaigns were positive about the law change, framing it as a moral good, however public reactions to the media coverage were mixed, with some people feeling a loss of individual freedom and a lack of trust in the organ donation system. Incorrect and harmful information about organ donation spread, which targeted certain ethnic minority groups often encouraging people to opt-out of organ donation.  

4. Support for organ donation

The law change has had no effect on public support for organ donation which remains positive.

5. Healthcare professionals

The law change did not make things any easier for staff managing these complex and sensitive end of life care processes.

6. Bereaved families

The 'soft' opt-out system has not yet made decisions or experiences any easier for families at the bedside.

7. What can we learn from Spain?

Spain's organ donation system has been very successful and uses an opt-out system that is similar to England's, but it also has more resources to support organ donation in end of life care.

Read more about this here 

 

What should happen next?

Based on the findings from this study, researchers made several recommendations for improving the organ donation system in England:

• Media campaigns: more communication is needed to help people understand what is involved in organ donation, and the changed role of the family.
• Improve the organ donor register: decisions made by individuals on the organ donor register should be further protected.
• Simplify the organ donation 'consent' processes: families should only have to complete the most essential processes and documents during organ donation to reduce the burden on them.
• Invest in infrastructure: hospitals need adequate staffing and resources to deliver an opt-out system as imagined.
• Define deemed consent: there needs to be further clarity about what deemed consent means to help the public understand the new system.
• Adapt to the new law: embedding organ donation in end-of-life care and developing the current system to work in line with the opt-out legislation.

Conclusion

This research shows that legal changes alone are not enough to solve complex healthcare challenges. A successful organ donation system needs a combination of appropriate laws, adequate resources, skilled healthcare professionals, public support, and ongoing commitment to improvement. 

A new resource recently launched to help

The research team have recently produced a new resource to help address confusions and misconceptions around the opt-out system which provides clear explanations of all elements of organ donation. The new online resource helps families to understand what donating organs means for an individual, support informed conversations about donation, and ensure people's decisions are better understood and respected. It helps by sharing the real experiences of people who have been involved in an organ donation conversation after their relative died and of the professionals who were involved in supporting families through such an incredibly difficult time.

It includes explanations from specialist nurses along with dedicated sections on ethnicity and faith, supporting communities where discussions about organ donation may be challenging and where misinformation has caused confusion. 

See the new resource 

 

Read the full article

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Funding

This research was funded by the NIHR Policy Research Programme through its core support to the Policy Innovation and Evaluation Research Unit.

Read the original article

This is a summary of: Mc Laughlin L, Williams L, Noyes J, Al-Haboubi M, Boadu P, Bostock J, O'Neill S, Thomas K, Mays N, Evaluation of the Organ Donation (Deemed Consent) Act, 2019 in England, Final Report to Department of Health and Social Care, and National Institute for Health Research, Policy Research Programme, Policy Innovation and Evaluation Research Unit. August 2024. DOI: 10.17037/PUBS.04673056. (available at: https://research.bangor.ac.uk/en/publications/evaluation-of-the-organ-donation-deemed-consent-act-2019-in-engla)

This summary has been approved by a member of the research team.