Assuming Consent to Increase Organ Donation Rates
Yes, it sounds ethically questionable. No, it’s not a silver bullet. And yes, we should still do it.
Every day, 18 Europeans and 15 Americans die while waiting for an organ transplant. And yet a single donor can save up to eight lives. Why, then, do we still have waiting lists and seemingly preventable deaths?
The biggest factor, it turns out, is the complexity of the procedure.
As a general rule, organs can be recovered from a person who has suffered a brain death in a hospital. This clearly reduces the potential donor pool tremendously, so let’s unpack the practice.
Brain death occurs when one’s brain loses all function (interestingly, in the UK the requirement is brain stem death, focusing on the loss of functions that indicate consciousness). A doctor confirms brain death by following a set of standard procedures — shining a torch into both eyes, pinching the nose, disconnecting the ventilator for a short period of time, and others — to elicit responses from the brain.
Now here’s the important bit: when someone’s declared brain dead, their breathing and blood circulation can be supported mechanically, thus keeping their vital organs alive and functioning. This gives everyone a bit of time: families can make a donation decision, doctors can prepare for surgery, transplant coordinators can find suitable recipients.
And yet brain death is not only uncommon — with improving medical practices and fewer people dying in traffic accidents across the Western world, brain death is becoming increasingly rare.
So some countries are now recovering organs from people who have suffered circulatory death. When heart and lungs fail, recovery must be performed within minutes to prevent damage. And yet Spain, Belgium, the UK, and several other countries are now routinely saving lives by retrieving organs after heartbeat has stopped, even outside the hospital setting.
What size is your pancreas?
But difficulties don’t end with organ recovery. When an organ becomes available, a recipient must be found. While countries maintain transplant waiting lists, the important piece of the puzzle is matching the organ with a person. Blood type is an obvious criterion, but organ size often matters (e.g., a new heart must fit within the rib cage, while a liver — seriously! — can be cut), and the distance between the organ and the patient must considered as well (e.g., a heart can survive outside the body for only 4 to 6 hours).
Old enough to be my grandfather?
Alright, so this one’s a myth. You are never too old to become a donor — the only thing that matters is the quality of your organs¹. The oldest known internal organ donor was a 92-year-old from Texas, while a 107-year-old from Scotland donated her corneas in 2016.
So what are my chances?
All in all, given the current state of the medical art, the likelihood that the donor dies in a way that allows organ recovery, and the difficulties in matching donors with recipients, you are much more likely to require an organ during your lifetime than to be able to donate one after death.
Which is why it’s very important for everyone to be a potential donor. And yet pretty much everywhere in the world people on the transplant waiting list outnumber available donors. So, how do we get everyone to sign up?
Most countries use one of the two legislative frameworks when deciding whether someone should become an organ donor after death. The informed consent approach considers a person a potential donor if they have explicitly stated their wish to become a donor after death. Informed consent countries often maintain centralized donor registries that allow everyone to officially record their decisions. As a general rule, few people do so — because they’re not aware of it, because it doesn’t feel urgent, or because it’s probably a bit of a hassle. It turns out, however, that it doesn’t really matter. In most countries, these registries are not legally binding, so when the time comes, it’s the family that makes the call. So talk to your family now.
The other popular approach is the presumed consent framework. Here, every person is assumed to be willing to become a donor after death unless they have explicitly stated otherwise. In most cases, a refusal to become a donor can be registered centrally as well (and that decision is always respected). In practice, very few countries employ a strong assumption of consent when no explicit consent has been given². For example, Spain’s presumed consent laws technically do not require next-of-kin approval; yet in practice the most successful organ donation and transplant system in the world always leaves the final decision to the family. The catch is, only 13% of them say no, compared to 37% of the British.
So why do families say no?
Every country, every family, every situation is different. But really, we are asking people to make a very intimate, difficult decision at the time of extreme distress. They might have no idea what the deceased would have wanted. They might be worried about how the recovered organs will be used. They might have religious beliefs about body integrity. Or, as a study of donation refusals in Iran has found, they might outright reject the criteria for brain death.
Presumed consent (alone) is not the answer
The evidence regarding the success of presumed vs. informed consent systems appears to be mixed. Some studies have found that presumed consent has a significant positive effect on donation rates. Others have suggested that factors other than consent laws are more likely to explain differences in donor rates. Indeed, Spain’s donor rate skyrocketed not when the country introduced the presumed consent law in 1979, but when it launched the National Transplant Organization in 1989. And Bulgaria has both the presumed consent law and one of the worst donor rates in Europe, 13 times lower than Spain’s.
And really, if you stop and think about it, the two frameworks don’t differ much in practice. In both cases, potential donors can express their wishes before death, yet it’s the family that makes the final call. Presumed consent could nudge more people towards saying yes — we know that people often fall back to the default. It could also be a way to show that becoming a donor after death is not an extraordinary decision — rather, refusing to become one is.
On the other hand, presumed consent comes with ethical baggage. Can we really consider someone a potential donor if they haven’t said no? They might have tacitly consented, sure. But maybe they were simply not aware of the law, or were not comfortable expressing their refusal. In fact, if done wrong, introducing a presumed consent law could very well backfire. In 1998, Brazil ended up abolishing a 1997 presumed consent law after a public outcry and massive opt-outs. Indeed, presumed consent systems create a group of non-donors that wouldn’t have existed otherwise. While knowing that someone doesn’t want to be a donor is valuable, having people opt out because of a botched implementation could lead to a disaster.
In short, presumed consent is a good idea if done well, but it won’t magically fix all problems. As Spain (and, more recently, Croatia) has demonstrated, what’s needed is better infrastructure, more funding, increased public awareness, and staff who start talking to families — and potential donors — before the decision becomes imminent.
Presumed consent is a good first step
But while presumed consent alone is not the answer, it can be a great first step³. The topic of organ donation after death should be terribly boring: everybody does it, why are we even talking about it? But before it can become terribly boring, it must first become terribly interesting. So interesting that every family would discuss it over dinner. So interesting that every celebrity would declare their intention publicly. So interesting that Eminem would rap about not waking up one day, memories gone, through music and organs my soul living on. (I know he wouldn’t sing that, it doesn’t have any expletives and it rhymes too well!)
Presumed consent is a perfect interesting conversation starter. And it just might save lives.
- According to this study, while receiving a kidney transplant from a donor aged 75+ leads to a significantly higher risk of death, that risk is nevertheless much lower than the risk associated with not receiving a transplant at all.
- China technically employs the informed consent framework. In practice, the country has been employing forced organ harvesting from its prisoners, particularly those of religious and ethnic Albanians minorities. If you want to know more, here’s a detailed report from the China Tribunal.
- I would also outlaw family veto rights in cases where the will of the deceased has been officially recorded. Because, seriously. And I’d look into incentives. While financial incentives seem morally questionable and not exactly in line with the idea of organ donation being a normal part of one’s life and death, Israel and a few other countries have experimented with giving donors transplant priority.