Opt-out laws designed to make organ donation easier may actually have made it more difficult.

Leah McLaughlin Researcher, Faculty of Health Sciences, Bangor University

England in 2020 opt-out system Organ donation aims to make it easier for people to donate their organs after death. of Organ Donation (Deemed Consent) Act 2019 Unless someone explicitly opts out, it is assumed that they consent to organ donation.

It was hoped that this change would increase the number of organ donations and ultimately save more lives. but the study A colleague and I uncovered a different story. Rather than simplifying organ donation, this law created further confusion and complexity. This may help explain why organ donation rates have not recovered from the decline seen during the pandemic.

consent

Before the law change, organ donors in the UK were required to register their consent and opt into the system. Under the new system, adults over the age of 18 will be deemed to have consented unless they opt out. However, this law is “soft”. Family members are supposed to support the decision, but can override the decision without consequences if they disagree.

The law was introduced at the height of the COVID-19 pandemic and would require individuals to declare that they do not want to donate organs or tissue, due to the burden on individuals who must register. The aim was to increase the provision rate by shifting the burden to Similar laws were already in force wales Since 2015 Scotland In 2021.

However, the results did not meet expectations. The consent rate for organ donation in the UK is dropped Since the law took effect, the donation rate has increased from 67% in 2019 to 61% in 2023. A similar thing happened in Wales, where the donation rate fell from 63% to 60.5%, and in Scotland, where the donation rate fell from 63.6% to 56.3%.

COVID-19 (new coronavirus infection)

This decline coincides with the spread of COVID-19, making it difficult to tease apart the impact of the legal changes and their lasting effects. Impact of the pandemic About how people interact with health services. However, this means that people who wish to donate their organs do not necessarily leave clear instructions that they wish to donate, which can affect the feelings of families and health professionals responsible for enforcing the law. It is possible to give

our research It involved interviewing families of potential organ donors and medical professionals involved in the process. We found that although the law presupposes the consent of loved ones, many families still say they want to be the final decision-maker. This reflects the potential for disruption and stress during an already difficult time.

What did I do wrong?

A key issue is that deemed consent laws challenge long-standing norms in medicine that emphasize the role of explicit consent, particularly family consent. This departure from established ethical practices places medical professionals in a difficult position. They now face the dilemma of wanting to respect the law and increase organ donations, but also risk being seen as crossing ethical boundaries by “harvesting organs” without the explicit consent of families. .

Fear of being seen as disregarding the feelings and rights of families has led to high levels of risk aversion among those responsible for law enforcement. As a result, the process of obtaining consent has become increasingly complex and sensitive. This defeated the original purpose of the law.

However, it is important to understand this situation empathetically. The risk-averse attitude adopted by public authorities is not a failure of intent, but rather reflects the ethical and emotional complexities surrounding organ donation.

Well-intentioned legal reform, while sound in theory, faces practical challenges arising from the need to balance the law while respecting the sensitivities of grieving families.

ethical tension

The expected increase in organ donations has not materialized. While the pandemic may have played a role in this, our research addresses underlying ethical tensions and the need for clear and compassionate communication with families during these difficult times. Failure to do so suggests that legal reform alone is insufficient.

many families we talked to I couldn't understand it completely The concept of deemed consent. This is considered a decision to donate unless the individual actively opts out. In some cases, families struggle with the idea of ​​their loved one undergoing surgery and lose sight of the lives that organ donation could save.

The process was also difficult. Families faced complex consent forms and lengthy procedures, and the emotional burden of losing a loved one increased.

What needs to change?

Our research suggests several possible ways to improve the system. It is essential to deepen public understanding. More explicit public education campaigns are needed to explain to people how opt-out systems work and to explain to health care providers the importance of discussing organ donation decisions with families. Many people still don't understand that if they don't opt ​​out, they consent.

Processes also need to be simplified. Reducing the steps involved in consenting to organ donation would ease the burden on grieving families.

Strengthening donor decisions could also improve the situation. give legal significance to decisions made in life, such as registering for organ donor registrymay prevent family members from overriding their loved one's wishes.

It is important that medical professionals receive appropriate training. Nurses and doctors need better training to navigate complex laws so they can support families during organ donation discussions.

Additionally, regularly reminding people to update their organ donation wishes could ensure families are aware of their loved one's wishes and reduce confusion at critical moments. Only then can we achieve our goal of increasing organ donation rates and saving more lives.

This article was first published on The Conversation