Research shows that opt-out laws intended to make organ donation easier may actually have made it more complex

In 2020, England introduced opt-out system on organ donation to facilitate the donation of organs after a person’s death. The Organ Donation (Presumed Consent) Act 2019 it was assumed that unless someone explicitly resigned, they had consented to organ donation.

This change was expected to raise the number of organ donors and ultimately save more lives. But tests by me and my colleagues reveals a different story. Instead of simplifying organ donation, the law has created more confusion and complications. This may aid explain why organ donation rates have not increased after the decline seen during the pandemic.

Before the law changed, organ donation in England required you to register on the system by registering your consent. Under the fresh system, unless an adult over 18 opts out, his or her consent is presumed. However, the law is “tender”. Families should support this decision, but can overturn it if they disagree, without consequences.

The law, introduced at the height of the Covid-19 pandemic, was intended to raise the number of donors by shifting the burden from individuals who must register to people who must declare that they do not want to donate organs or tissue. Similar regulations have already entered into force in Wales in 2015 and beyond Scotland in 2021

But the results did not meet expectations. Consent rates for organ donation in England have dropped since the Act came into force from 67% in 2019 to 61% in 2023. The same was the case in Wales, where the percentage of donations fell from 63% to 60.5%, and in Scotland, where the percentage dropped from 63, 6% to 56.3%.

This decline coincided with the spread of the Covid-19 virus and it is complex to link the effects of the change in law with its duration effects of the pandemic on people’s interactions with health services. However, this means that potential organ donors do not necessarily leave clear instructions regarding organ donation, which may impact the well-being of their families and medical staff responsible for implementing the law.

Our research included interviews with families of potential organ donors and health care professionals involved in the process. We found that many families still said they wanted to be the final decision-makers, even though the law required their loved one’s consent. This reflects the risk of confusion and stress in an already complex period.

What went wrong?

The critical issue is that presumed consent law challenges a long-standing norm in health care that emphasizes explicit consent, and especially the role of family consent. This departure from established ethical practices has placed healthcare workers in a complex position. They now face a dilemma – they want to comply with the law and raise the number of organ donations, but at the same time they risk being perceived as crossing ethical boundaries by “removing organs” without the explicit consent of the family.

The fear of being seen as disregarding the emotions and rights of bereaved families has led to high levels of risk aversion among those responsible for implementing the law. As a result, consent processes are becoming more sophisticated and careful. This undermines the original purpose of the Act.

However, a compassionate understanding of the situation is key. The risk aversion adopted by official bodies is not a lack of intention, but a reflection of the ethical and emotional complexities surrounding organ donation.

Well-intentioned legal changes, while theoretically sound, have faced practical challenges in balancing the law with respect for the sensitivities of bereaved families.

The expected raise in organ donations did not occur. While the pandemic may have played a role in this, our research suggests that legislative changes alone are insufficient unless we address underlying ethical tensions and the need for clear, compassionate communication with families in such complex times.

Many of the families we talked to I didn’t fully understand concept of presumed consent. A decision to donate is assumed here unless the person has actively opted out. In some cases, families have struggled with the thought of their loved one undergoing surgery, losing sight of the potential life saved by organ donation.

The process was also overwhelming. Families had to deal with sophisticated consent documents and lengthy procedures, which added to the emotional burden of losing a loved one.

What needs to be changed?

Our research suggests several possible ways to improve the system. Better public understanding is crucial. More explicit public education campaigns are needed to explain to people how the opt-out system works and to health care providers about the importance of discussing the decision to donate organs with family members. Many people still do not understand that if they do not opt ​​out, they are assumed to have consented.

This process also needs to be simplified. Reducing the “consent” steps involved in organ donation would aid ease the burden on bereaved families.

Strengthening donor decisions can also aid in this situation. Giving more legal weight to decisions you make in life, such as registering for Organ donor registercould prevent families from changing their loved ones’ wishes.

It is critical that healthcare workers are properly trained. Nurses and doctors need better training to navigate the complexities of the law so they can aid families with conversations about organ donation.

Regular reminders encouraging people to update their organ donation preferences can aid ensure families are aware of their loved ones’ wishes, reducing confusion at critical times. Only then can we hope to raise organ donations and achieve the goal of saving more lives.