Organ donation: whether we opt in or out, research finds it’s the will of our family that matters

Organ transplantation allows patients who are suffering from organ failure to receive a healthy organ from a donor. This procedure can help to extend and improve the lives of recipients, and is often the only hope for people who are in need of a transplant.

Unfortunately, there are not enough organs available for all the patients who need them. In the European Union, although 36,000 patients received a transplant in 2021, 20 patients died every day while waiting for an organ.

Difference among consent laws

One strategy to address the shortage of transplantable organs is to increase the pool of potential donors by making changes to the system of consent. There are two main consent policies for deceased organ donation in place around the world:

— the opt-in system, in which individuals must actively consent to becoming organ donors after they die;

— the opt-out system, in which individuals are deemed to have consented to organ donation unless they expressly opted out.

In recent years, several European countries have changed their laws from opt-in to opt-out, including Greece, Iceland, the Netherlands, Switzerland and the United Kingdom. More European countries are considering it, such as Germany, Denmark and Romania.

The rationale behind this shift is that opt-out systems could increase organ procurement rates, as the default assumption is that the individual is willing to donate. This eliminates the need for people to actively register as organ donors, which can be a major barrier for some people.

Family involvement

Although several studies have been conducted to assess the actual impact of consent policies on organ procurement rates, their results are conflicting.

Overall, the evidence shows that opt-out systems are associated with higher rates of organ retrieval. However, it is not clear if and to what extent the introduction of an opt-out system, by itself, causes the increase.

In our study, we tried to find out. To exclude the influence of other factors, we focused on how individuals’ preferences and decisions, or lack thereof, directly determine the outcome, i.e. whether organs can be retrieved or not.

On the face of it, the situation seems straightforward. Doctors always respect people’s preferences, regardless of the system. When the deceased wanted to become a donor, doctors proceed. When the deceased didn’t want to donate, doctors do not proceed. The difference between opt-in and opt-out would only therefore show up when the deceased did not express any preference. If an opt-out system is in place the organs can be retrieved under these circumstance. If an opt-in system is in place, they cannot be retrieved.

However, the family also has a role to play in the decision-making process. In most countries, both opt-in and opt-out, the family is consulted about organ donation. In practice, therefore, instead of retrieving or not retrieving organs by default, doctors typically follow the family’s decision.

In our research, we found that the only time they didn’t was when the family of the deceased was unable to make a decision on the matter or couldn’t be located by medical teams in time – or when the deceased didn’t have any relatives. It is only in these circumstances, therefore, that an the opt-out system makes a difference.

Consent systems only make a difference on rare occasions

Most experts in the field know that this circumstance is uncommon, but this is too vague. Hence, to answer this question, we sought data from both scientific articles and institutional reports all over the world.

Based on data from 20+ countries, we found that this circumstance is indeed rare. Overall, it occurs in less than 5% of the cases. In Germany, Denmark, Finland, Spain and the United Kingdom, statistics show that it ranges from 0 to 2% of all cases of potential organ donors.

Therefore, according to our analysis, changing the system of consent in any of these countries, all other things being equal, would have a very limited direct impact on organ donation rates. However, this does not necessarily mean that moving from opt-in to opt-out is ineffective, because the move may have indirect consequences. For example, increased press coverage of organ donation could raise public awareness of the organ shortage and reduce the number of individuals and families who object.

What our research shows is that politicians and people in general should perhaps not put so much focus on changing consent policies for donation and more on modifiable factors influencing family decision-making, such as building trust by providing high quality care for the potential donor and adequate information on the process of organ procurement, and by using well trained professionals in the approach.