Donor Registration Week, register your choice on organ donation
The new Donor Act will come into force in July 2020, which hopefully leads to more attention for donor registration. While 88% of Dutch inhabitants would want to receive an organ if needed, only 58% of the 42% registered donors has provided consent for donation.
The current situation
At this moment, 1236 patients are waiting for an organ transplant in the Netherlands. This transplant could significantly improve their quality of life, maybe even save their life. For many patients, this organ will unfortunately not become available in time, meaning that they will die on the waiting list. Patients may also be removed from the waiting list because their physical condition deteriorates and transplantation is no longer possible.
Over recent decades, various healthcare solutions have been developed to reduce the waiting list. First, there has been an increase in the number of transplantations in which patients receive an organ (kidney or liver) from a living donor. For instance, in the Netherlands currently more transplantations are conducted using kidneys from living donors than from deceased donors. For the shortage of other organs, however, living donation is not a realistic solution. Second, organ quality has been improved using different strategies, for example organ perfusion. Despite these promising developments, however, the gap between organ demand and supply continues to grow, because of our aging population and the increasing prevalence of cardiovascular diseases and diabetes. Therefore, it is highly relevant to get more people to think critically about their willingness to help other people after their own death.
The Netherlands – like the UK, Turkey, Germany, and Ireland – currently has an organ donor registration system in which organ donation can only take place with the explicit consent of the donor or his or her relatives (Opt-in system). At the beginning of 2019, only 42% of the Dutch population aged 12 years and older were registered, of which 58% provided consent, 31% refused consent, and 11% indicated that relatives must decide about organ donation.
What is the reason for this low percentage of registrations? Are (younger) people not thinking about death? Do people think it will not happen to them? Is it a matter of laziness? Or does fear play a role, in the sense of being braindead and undergoing surgery?
To explain people’s health behaviour, researchers widely draw on the Theory of Planned Behaviour (Ajzen, 1988). This theory states that behavioural intention is the primary determinant of health behaviour, which is influenced by the attitude towards this behaviour (what is expected about the outcome and what value does this have?), the subjective norm (what does your social environment think about this health behaviour?), and the extent of perceived control (how difficult do you expect it will be to show this health behaviour?). Based on this psychological theory, registration intentions may be influenced by altruism, people’s willingness to discuss organ donation with family members, and the perceived complexity of the registration process, as well as by knowledge about organ donation procedures, the physical situation of patients on the waiting list, and the positive outcome of transplantation. Providing people with more information about organ donation procedures and the registration procedure, and promoting the discussion on organ donation within families or social networks could potentially help increase the number of registrations.
July 2020 sees the introduction of new Donor Legislation in the Netherlands: an opt-out system. People who are not registered at that moment will be invited to specify their choice in the Donor Register. If someone still does not register after a reminder, he or she will automatically be listed as having ‘no objection’ to organ donation. A letter of confirmation will be sent after this registration. Each hospital will have a transplant coordinator, who will discuss organ donation with the relatives of a deceased person. If someone is registered as having no objection to organ donation, but relatives show that the deceased person really did not want to be a donor, they can stop the donation. This is why it is very important that preferences regarding organ donation are discussed with relatives and specified in the Donor Register. The donor registration can be adjusted at any time.
This active, opt-out organ donor registration system is already used in Croatia, Spain, Belgium, France, Finland, Sweden, Austria, and Italy. In these countries, generally higher numbers of post-mortal organ transplants take place. The change to an opt-out system may not in itself directly affect the number of organ transplants, but it will increase awareness of organ donation. Starting and stimulating a discussion will lead to an increased knowledge of each other’s preferences regarding organ donation and could ease the decision about donation for relatives. The longer-term consequences of the new law will potentially depend on the amount of trust people experience in the healthcare system of organ donation and transplantation. Therefore, along with implementing the opt-out system, it is important to evaluate and monitor the conditions for a successful organ donation healthcare system.
Organ donation affects everyone. No one knows what the future holds, and whether or not you may one day need an organ. The system can only provide if there are enough donors. So, let’s all think about our own willingness to be a donor. And if we make the decision to help someone after our own death, let us register that choice now, while we’re alive.
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