In the previous blog post, I showed how the registration of organ donors using a Boolean variable leads to some drivers to be misclassified. I also showed how requiring drivers to opt-in to the donor registry causes less severe types of misclassifications than opt-out.

Now I will discuss how opt-out can result in uncertainty in the composition of drivers listed in the registry. This uncertainly can impact the behavior of organ procurement coordinators and family members.

Role of certainty in interactions between counselors and family

In states that maintain a donor registry, they share the list of names on the registry with the organ procurement organization (OPO) that is responsible for recovery and distribution of organs for transplant. If a patient dies under conditions that allow the organs to be recovered, an organ recovery coordinator at the OPO will see if the patient’s name is on the organ registry.

Under opt-in, if the patient’s name is on the registry the coordinator can be fairly certain the deceased patient wanted to be a donor (categories 1a and 1b as defined in the previous blog) and can confidently tell the family this and proceed with recovery. Under the Uniform Anatomical Gift Act enacted in most states, a gift by a donor cannot be revoked by the family.

If the patient’s name is not on the registry, the intent of the patient isn’t known. Perhaps the patient wanted to donate (category 3a), didn’t want to donate (2b or 3b), or wanted the family to decide (2a or 4). The coordinator can say the patient’s wishes were not known and politely request the family to make an organ donation on behalf of the deceased patient.

Under opt-out, there are more categories of drivers included in the registry. This reduces the certainty in the composition of the donor registry. This is true even if no drivers are misclassified (i.e., no drivers fall into categories 3a, 3b, or 4), This uncertainty will have an impact on the behavior of the coordinators.

Specifically, if the deceased patient’s name is on the registry, the coordinator cannot be certain the deceased patient wanted to be a donor. She must rely on presumed consent. However, if the family complains that it was not the deceased patient’s intent to be a donor, then the ambiguous nature of the composition of the registry may lead to a delay, which will make recovery impossible. If the OPO pushes the issue, eventually, a court case may resolve the issue, but if the ruling is in favor of the patient’s family, then the entire registry is placed at risk.

Conversely, if the patient’s name is not on the registry, then having the coordinator approach the family to request a donation is also problematic since a donation would require the family to override the wishes of the deceased. If that is allowed, then the wishes of the deceased should be allowed to be overridden if she is on the organ donor registry as well. Again, if the OPO pushes the issue, the organ donor registry is placed at risk.

A hypothetical example of outcomes

Let’s look at some hypothetical numbers to illustrate a possible outcome. In the first table below, the state has an opt-in registration system and has a 64% registration rate. (This is very high, but is achieved in Washington, the state where I live.) The OPO approaches the family of every patient who dies under conditions that allow the organs to be recovered. For patients on the registry it works to enforce the UAGA and gets 99% of families to cooperate in time. For patients not on the registry, it works hard to persuade the family to donate and gets half to cooperate. Overall 81% of organs are recovered.

Opt-in case            Patient on organ registry
Yes No Row total
Family
agrees to
Yes 63
(99%)
18
(50%)
81
donation No 1
(1%)
18
(50%)
19
Col. total 64 36 100

Under opt-in, 64% of drivers register to be donors and 81% of organs are recovered

Now suppose that the state switches to an opt-out registration system and the registration rate rises to 88%. However, the cooperation rate among families drops from 99% to 90%. Also, the OPO does not approach any of the families of patients who were on the opt-out list. Overall, the organ recovery rate drops to 79%, lower than it was before the switch. Naturally, I set the numbers to make my case, but it illustrates that switching from opt-in to opt-out will not on its own automatically ensure that donation rates will increase.

Opt-out case             Patient on organ registry
Yes No Row total
Family
agrees to
Yes 79
(90%)
0
(0%)
79
donation No 9
(10%)
12
(100%)
21
Col. total 88 12 100

Under opt-out, 88% of drivers register to be donors but only 79% of organs are recovered

Mandated choice

As mentioned in the previous blog entry, there is another option besides opt-in and opt-out called mandated choice. Under mandated choice, the state wants to eliminate the last categories 3a, 3b, and 4 (driver choice undeclared or driver undecided) that create ambiguity. Thus, the law requires the DMV clerk to ask every driver to declare a choice. (It’s not clear what happens if the driver refuses to make a choice or if the clerk forgets to ask or forgets to record the choice.) Several states have tried it, but have given up and returned to opt-in. Currently, only California is experimenting with it, see Jun 2010 blog post.

Texas, which had about a 15% registration rate with opt-in, increased it to about 20% with mandated choice. Unfortunately, I can’t find any data to show if overall organ recovery rate rose or fell after this change. However, the state has abandoned mandated choice, so my guess is the OPOs in that state either saw a drop in donation rates or feared one would occur and lobbied for the return to opt-in.

How opt-out and mandated choice may reduce donation rates

Why has mandated choice failed, and why could opt-out cause donation rates to fall? I think a lot of it may be because of people’s fear of death. Signing up to be an organ donor while applying for a driver’s license is an admission by the registrant that she may die in an accident and needs to make a decision about the disposition of her organs in the event that happens.

Under the current opt-in process, those who are not afraid of death opt-in. Those who are afraid don’t state their preference. For those who don’t opt-in, the decision to donate is still available later to the family. Under opt-out, people who are willing to donate (or let their family decide) but are not willing to admit they may die will opt-out. This is a firm decision, precluding the family from making the donation later.

In the next blog post we will explore ways to make opt-out compatible with individual choice and consent.

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