Understanding what influences organ donation

By Dr Lee Shepherd, Northumbria University, UK and Professor Ronan E. O’Carroll, University of Stirling, UK and Professor Eamonn Ferguson, University of Nottingham, UK

There are numerous stories of how deceased organ transplantation has offered a lifeline for people. Indeed, each deceased organ donor can change the lives of up to nine people. However, there are too few organs available for transplantation. This shortage results in large waiting lists and people dying before they receive an organ. Therefore, we need to understand what factors influence the likelihood that someone will donate their organs when they die.

Consent Legislation

Countries use different organ donor consent legislation.

Opt-in consent – With opt-in consent, by default people are believed not to support donation. People have to take action (e.g., register) to show they are willing for their organs to be transplanted when they die. 

Opt-out consent – With opt-out consent, people have to take action to show they do not want their organs to be transplanted when they die. For example, people may register as a non-donor or tell their relatives their wishes. Some opt-out systems also have an opt-in register where people can actively register as an organ donor. Anyone who has not stated their wishes to be a non-donor is assumed to support donation. In soft opt-out systems, family members are then asked whether they approve organ transplantation. In hard opt-out systems, transplantation can occur without family’s permission. 

Some research, including our own, has found deceased donation rates are higher in opt-out than opt-in systems. However, some research has not found this. Opt-out consent systems still have waiting lists for organs. Additionally, living donor rates are also lower in opt-out than opt-in systems. In opt-out systems, people may also feel the state is controlling their organs. This means that on its own opt-out consent legislation is unlikely to solve the organ shortage problem.

Role of Family

Family members are often asked about whether or not the deceased’s organs can be transplanted. This is especially important in soft opt-out systems. The deceased’s registered wishes help family members to decide whether or not to support transplantation. However, if the deceased has not registered or discussed their wishes with their family, it can be very difficult for families to make a decision. Even with opt-out consent, family members are more likely to approve transplantation when the deceased had actively opted-in than when they have not registered a decision. Encouraging people to register a decision will make their wishes clear to family members. This may increase the number of potential donors.

Factors predicting registration

Numerous factors influence registration decisions. Demographics predict registration. For example, in the UK ethnic minorities are less likely to opt-in and more likely to opt-out and a key research focus is to provide a better understanding of why this is. Social factors also influence registration. Indeed, the ‘lone wolf effect’ demonstrates people are more likely to opt-out after observing others doing this. Additionally, registration is also predicted by emotional beliefs towards organ donation. People are less likely to register as a donor when they feel disgust thinking about donation (ick factor) and believe that the body should be kept whole (bodily integrity). This research also found that people were more likely to be a registered donor when they viewed donation as beneficial (e.g., donating saving lives; perceived benefits). Sometimes there is a gap between people’s willingness to undertake an action and their actual behaviour. As such, people may want to opt-in, but fail to register this decision. Developing more positive emotions towards organ donation may encourage people who are willing to donate to take action and join the organ donor register.

Cognitive reappraisal involves helping people to think more positively about a topic in order to change their emotions. In a recent study, we asked people who had not registered a decision about organ donation to engage in cognitive reappraisal by considering the benefits of donation (e.g., donation saves lives or bringing meaning to a loved one’s death). We found that this cognitive reappraisal increased people’s willingness to register as a donor. Having a higher willingness to register made people more likely to subsequently opt-in. 

Practical recommendations

  • Legislation – There is mixed evidence around the effectiveness of introducing opt-out consent to improve organ transplantation rates. Countries with opt-out legislation still have organ transplant waiting lists. Therefore, on its own, opt-out consent is unlikely to resolve the shortage of donors.
  • Registration of the deceased’s wishes while alive – Family members are influenced by the deceased’s registered wishes. Therefore, it is important for family members to clearly know the deceased’s wishes. Some countries allow people to register both if they wish to be a donor (i.e., opt-in) and if they wish not to be a donor (i.e., opt-out). This makes the deceased’s wishes clear to family members who may need to decide whether or not the deceased’s organs can be transplanted. As such, this may help family members to make this decision.

Emotions – Emotions guide people’s decisions about whether or not to register as an organ donor. People are less likely to register as a donor if they have negative emotional beliefs towards organ donation. People are more likely to register when they hold positive emotional beliefs towards organ donation. Encouraging people who have not registered a decision to consider the benefits of organ donation may increase people’s willingness to register as an organ donor. This means we may need to reconsider how we discuss organ donation. Focusing our discussions on the benefits of organ donation (e.g., donation saves lives, donation brings meaning to the death of a loved one) may help encourage people to register as an organ donor.