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In 2020, England introduced an opt-out system for organ donation with the aim of making it easier for organs to be donated after a person’s death. The Organ Donation (Deemed Consent) Act 2019 assumed that unless someone explicitly opted out, they consented to organ donation.
This change was expected to boost the number of organ donations and, ultimately, save more lives. But research by my colleagues and I reveals a different story. Rather than simplifying organ donation, the law has created more confusion and complications. This may help explain why organ donation rates haven’t recovered from the drop seen during the pandemic.
Before the change in the law, organ donation in England required people to opt in to the system by registering their consent. With the new system, unless adults over the age of 18 opt out, their consent is presumed. The law is however “soft”. Families are supposed to support the decision, but can still override it, if they disagree, without consequence.
The law, introduced during the height of the COVID-19 pandemic, was meant to increase donation rates by shifting the burden from individuals needing to sign up to individuals needing to declare they didn’t want to donate organs or tissue. Similar laws had already been implemented in Wales in 2015 and later in Scotland in 2021.
But the results haven’t lived up to expectations. Consent rates for organ donation in England have dropped since the law came into effect, from 67% in 2019 to 61% in 2023. The same has happened in Wales where donation rates have reduced from 63% to 60.5%, and in Scotland where rates have dropped from 63.6% to 56.3%.
This drop coincided with the spread of COVID-19, and it’s difficult to untangle the consequences of the change in the law with the lasting effects of the pandemic on how people interact with health services. But it does mean that potential organ donors don’t necessarily leave explicit instructions that they wish to donate, which may affect how their families, and the healthcare staff responsible for implementing the law, feel.
Our research involved interviewing the families of potential organ donors and healthcare professionals involved in the process. We found that many families still said they wanted to be the final decision-makers, even though the law presumed their loved one’s consent. This reflects the potential for confusion and stress at an already difficult time.
What went wrong?
An important issue is that the deemed consent law challenges the longstanding norm in healthcare that emphasises explicit consent, and particularly the role of familial consent. This divergence from established ethical practices has placed healthcare professionals in a difficult position. They now face a dilemma – they want to respect the law and increase organ donations, but they also risk being perceived as overstepping ethical boundaries by “taking organs” without clear family consent.
This fear of being seen as disregarding the emotions and rights of bereaved families has led to a high level of risk aversion among those responsible for implementing the law. Consequently, the processes involved in obtaining consent have become increasingly complex and cautious. This has undermined the law’s original purpose.
A sympathetic understanding of this situation is crucial, however. The risk-averse stance adopted by official bodies is not a failure of intention but a reflection of the ethical and emotional complexities surrounding organ donation.
Well-meaning legal changes, while theoretically sound, have encountered practical challenges that stem from the need to balance the law with respect for the sensitivities of grieving families.
The anticipated increase in organ donation has not materialised. Although the pandemic may have played a role in this, our research suggests that legislative changes alone are insufficient without addressing the underlying ethical tensions and the need for clear, compassionate communication with families during such difficult times.
Many families we spoke with didn’t fully understand the concept of deemed consent. This is where a decision to donate is assumed unless a person has actively opted out. In some cases, families struggled with the idea of their loved one undergoing surgery, losing sight of the potential lives saved through organ donation.
The process was also overwhelming. Families were faced with complex consent paperwork and lengthy procedures, adding to the emotional burden of losing a loved one.
What needs to change?
Our research suggests several possible ways to improve the system. Better public understanding is vital. Clearer public education campaigns are needed to explain to people how the opt-out system works and to healthcare providers the importance of discussing organ donation decisions with family members. Many people still don’t understand that if they don’t opt out, they are presumed to have given consent.
The process needs to be simplified too. Reducing the steps involved in “consenting” to organ donation would help ease the burden on grieving families.
Strengthening donor decisions may also help the situation. Giving more legal weight to decisions made in life, such as registration on the Organ Donor Register, could prevent families from overturning their loved ones’ wishes.
It’s important that healthcare professionals are trained appropriately. Nurses and doctors need better training to navigate the complexities of the law so they can help families during organ donation discussions.
And regular prompts encouraging people to update their organ donation preferences may help to ensure that families are aware of their loved ones’ wishes, reducing confusion at critical moments. Only then can we hope to increase organ donation rates and fulfil the goal of saving more lives.
Leah McLaughlin receives funding from National Institute Health Research (NIHR) and Health and Care Research Wales (HCRW).
