The government in Nova Scotia is jumping into the organ donation frey by considering changing the cadaveric organ donation sign up system from an opt in system to an opt out system. That is, rather than having to check a box saying you want to register as a cadaveric organ donor, instead you have to check a box saying you will not register as a cadaveric organ donor. I am using my words carefully as the system is just about registering as a cadaveric organ donor, not becoming an organ donor.
Such a system is being contemplated because, as we all know, the percentage of the population who register as organ donors is quite low. In Canada, while 90% of Canadians indicate that they support organ and tissue donation, only 24% have actually signed their organ donor cards. Why this disconnect you might ask? After all, the cost of registering as a donor is low, so why are more people not registering?
You have to recognize that the cost of registering as an organ donor is not zero. People hate incurring costs. People make decisions by weighing costs and benefits. The problem with registering as an organ donor, are that the benefits accruing the individual are minimal, nothing really other than a ‘warm glow’, but the costs to the individual are the time involved in reading the material, making the decision, ticking the box, and returning the form (either online or incurring another cost of a stamp). Often what happens is that the form is put aside for another day, which never comes. The system forces only those with extremely strong preferences to incur these costs and register as an organ donor, leaving those who don’t hold strong views to remain unregistered.
An opt in system works instead by forcing the cost onto the person who does not want to be registered as an organ donor. This tiny little change in the system, invokes substantial changes in the numbers who register simply by shifting the costs of registration from one group to another group. So if you don’t want to register, don’t want to be an organ donor, you can. You just simply need to register your preference.
By how much do opt out system change the registration rate? We have data from a number of countries to allow us to understand this. In terms of the effective consent rate, Europe provides an excellent comparison, shown in the graph below (reproduced from Johnson and Goldstein). Here you can see that the proportion of the population that registers as a cadaveric organ donor nearly almost 100% in opt out countries, yet ranges between 4-27% in opt-in countries.
It is important to note that a near 100% registration rate does not translate into a glut of organs, an oft overlooked aspect of the opt-out system. Even in countries with presumed consent, there is a waiting list for organs. An opt-out system does not change the conditions that are necessary to turn someone from a registered donor to an actual donor. Simply dying does not make you a donor. In fact, the best ‘death’ to ensure organ donation is a brain death on a ventilator.
Further, an opt-out system does not make up for poorly organized medical transplantation system, which has to work like clock work. A big problem in Canada is that, unlike the US, we are not governed by a national organ donation system. Canada does not have a United Network for Organ Sharing (UNOS). While there have been multiple attempts to establish one, federal-provincial bickering has prevented one from happening. Instead, each province has its own donor system.
Finally, and probably the most misunderstood aspect of an opt-out system, an opt-out system does not necessarily remove the family from making the final decision. In fact, few systems employ what is called hard consent, where the views of families are not taken into account. That is, opt-out does not automatically mean your family does not get a say. Spain, which has the most success of any country of turning a registered donor into an actual donor, has perfected a system of family consultation at the time of a death that could lead to organ donation.
In implementing an opt-out system, it is essential that due consideration be given to public perceptions and support. We can learn a lot from Britain whose attempt to implement an opt-out policy failed after fierce opposition from Muslims who objected on religious grounds. In a multi-cultural society such an Canada, ensuring public buy-in is important.
Of course, there is a third choice that is not discussed much. A way around the moral debates surrounding an opt-out system, is a mandated choice system. Under a mandated choice system, everyone must indicate their preferences. Such a system is in place in Illinois, which boasts a 60% registration rate compared to a national average of 38%. Such a system circumvents the moral debate, but does not change the other factors that are still necessary to turn a registered donor into an actual donor. If we want to translate registered donors into actual donors, we need to go beyond just the registration system in place.