What Is Death? When It Comes to the Dead Donor Rule, Maybe There’s No Good Option
Editors’ Note: This is the final essay in a three-part symposium addressing the question, “What is death?” Three bioethicists respond to a recent New York Times op-ed arguing that we need to redefine death in order to encourage more organ donations.
The death of a human being is the end of that human’s earthly life. It is a metaphysical event: the separation of the soul from the body. Many religious and philosophical traditions—my own Catholic tradition included—uphold that truth. Unlike other metaphysical events, however, death can be tied to biological markers. For many decades, two biological markers have been found to be sufficient indicators: the irreversible cessation of the circulatory and respiratory systems (cardiopulmonary death), or the irreversible cessation of all functions of the entire brain, including the brainstem (brain death). These markers have also been found legally sufficient, having been encoded with slight variations as the legal definition of death in many countries.
The biological indicators of death, however, have recently been disputed. First, we have seen headline-grabbing cases of misdiagnosed death. Usually, these are cases of brain death. The case of Jahi McMath’s premature diagnosis of death presented a tragic case of racial injustice, poor care, and a clear case of misdiagnosis. Despite meeting neurological criteria for death, McMath continued to grow, undergo puberty, and perhaps even respond to stimuli—things a dead person does not do.
A second kind of complication with our current definition of death is mentioned less frequently. This complication turns on the modal character of both cardiopulmonary and brain death: both definitions define death by what is possible (or, more specifically, not possible). In the case of both cardiopulmonary and brain death, irreversibility is built into the definitions. There is good reason for this. Death, being a metaphysical change, is indeed irreversible. Yet locating precise modal contours is notoriously difficult. The threshold of irreversibility may differ from one person and context to another, as cases of longshot resuscitation suggest. For every individual, there is a point at which circulatory and respiratory systems have stopped irreversibly, just as there is a point at which all brain activity has irreversibly ceased. And these thresholds may function well as biological markers of metaphysical death. The problem is that they can be exceedingly difficult to pinpoint.
These debates would be primarily philosophical and biological, were it not for the possibility of organ donation. Organ donation, which typically occurs after a declaration of brain death (rather than cardiopulmonary death), allows consenting donors to give vital organs to others through life-saving transplants. Reasonably enough, it has been taken as ethical bedrock that a donor must be dead for this gift to be given: the so-called Dead Donor Rule. Not a huge issue, you might initially think, even given the complications in pinpointing death. Simply wait until the threshold of death has been crossed unambiguously and declare death (and harvest organs from consenting donors) at that point. The complication here—explained well by Drs. Jauhar, Patel, and Smith in their New York Times op-ed “Organ Donors Are Too Rare: We Need a New Definition of Death”—is that, post-death, organs rapidly become unviable for transplantation. Yes, waiting for a long period after death before harvesting organs will ensure that the Dead Donor Rule is not broken, but it will also increase the chances that the organs become unviable.
How, then, can we maximize organ donation—and in doing so, save patients and respect the wishes of donors and their families—while keeping the Dead Donor Rule? As far as I can see, there is no ideal option. But there are more and less bad options.
Start with the worst—what we could call Death Revisionism. In recent years, Death Revisionism has taken at least two guises. The first is the position defended by Drs. Jauhar, Patel, and Smith. They argue that we should move the threshold of death to include patients in an irreversible coma. This would allow us to obtain more viable organs by using a new technique called normothermic regional perfusion (NRP), which both Christopher Tollefsen and Xavier Symons discussed in their articles. This method would arguably keep patients alive under both the cardiopulmonary and brain death standards. But with a revised definition of death, these patients would count as dead, and their organs could be harvested without breaking the Dead Donor Rule.
A similar kind of position, defended by stakeholders in the medical and bioethics communities, has recently been presented and debated regarding brain death. These Death Revisionists rightly point out that many cases of misdiagnosed brain death can be attributed to how brain death is diagnosed. Put simply: current tests for the irreversible cessation of all functions of the entire brain can sometimes miss certain kinds of brain activity. This is why a patient such as McMath could be pronounced brain-dead even while clearly retaining some brain activity. Death Revisionists point to these kinds of cases and argue that, rather than increase the rigor of our testing, we should revise brain-death criteria to make them align with testing practices. That way, cases of misdiagnosed brain death are defined out of existence—McMath and others like her count as dead not because their brains have ceased functioning, but because they meet diagnostic criteria.
Death Revisionism is deeply problematic for several reasons. First, Death Revisionists (Jauhar, Patel, and Smith included) may base their argument on the idea that:
The brain functions that matter most to life are those such as consciousness, memory, intention and desire. Once those higher brain functions are irreversibly gone, is it not fair to say that a person (as opposed to a body) has ceased to exist?
As Tollefsen points out, this conclusion isn’t fair, for relatively straightforward philosophical reasons. Humans are animals. Our existence is therefore not contingent on higher-level functions, but rather, on our continued biological functioning. Someone who has permanently lost consciousness is profoundly diminished in certain human capacities, but not dead.
Death Revisionists also go wrong in proposing that we should change the definition of death to better align with our practical interests. Tollefsen discusses this issue as well. In general—and not just in cases of defining death—this kind of move should strike us as deeply concerning. Policy and law should track reality. To redefine death for practical reasons is to invert this. It is to allow practical interests to reshape our understanding of reality. That won’t work—reality is what it is, regardless of our laws and policies. But it is also a dangerous precedent, one that leads us away from, not closer to, the truth.
There’s a third problem with Death Revisionism. It seeks to define an entire vulnerable population out of existence—in this case, those in an irreversible coma. Historical precedent tells us that any time a policy does this, we have good ethical reason to discard it. So that’s what I suggest we do with Death Revisionism. Set it aside as philosophically confused and morally problematic.
But what alternatives do we have? I would like to identify three other options. None, I believe, is as problematic as Death Revisionism. But none is obviously the right way forward.
First, the Keep Calm and Carry On approach says we can proceed without any significant changes to policy or practice. For those opposed to boat-rocking, the option is tempting. But I hope I have said enough to make it clear why it is problematic. Our current policies and practices leave us shaky in our understanding of death, open to misdiagnosis, and at risk of regularly (and unintentionally) breaking the Dead Donor Rule through organ harvesting. In light of these challenges, some changes must be made: either to our clinical means of diagnosing death, to our policies and laws surrounding it, or to our ethical understanding of organ harvesting.
Another option is Donation Revisionism. Donation Revisionists argue that our practices of organ donation should be radically revised, curtailed, or even eliminated. This could be done in several ways—we could, for example, change organ donation laws or adopt much stricter biological criteria for death. This “better safe than sorry” strategy carries an appeal. It ensures we are not killing people for their organs and likewise ensures that we don’t slip into Death Revisionism. The problem with Donation Revisionism is that, in attempting to avoid an evil, we may abandon a great good. As Tollefsen observes, “Pope Saint John Paul II spoke often and with approval of organ donation, going so far as to identify the practice as nurturing a Culture of Life.” That evaluation will strike most of us, Catholic and otherwise, as accurate. I know at least one person who is alive today because of vital organ donation. Donation Revisionism may allow us to attain moral certainty in organ donation, but at the expense of a great good, and indeed, of individual lives. We had best be confident of the terrain before heading down this path.
A final option is the one Tollefsen suggests. In the past, I have defended a similar position under the heading of Double Effect Donation. The idea behind Double Effect Donation is that we might reject the Dead Donor Rule in certain well-defined cases by considering more carefully the action theory underlying organ harvesting. Removing vital organs hastens death (though arguably, it does not necessarily hasten death). But is removing vital organs from a living person a form of killing, and thus intrinsically wrong? It may seem so, and I’m open to that conclusion. But things may be more complex. Here’s Tollefsen:
The removal of vital organs in these last moments for the sake of the good they might do brings with it an acceptance of a risk of hastening death. And this risk might, I think, be reasonably accepted if the patient has, when previously agreeing to organ donation, consented to it with full knowledge of the nature of the risk.
In other words, a living person may donate organs not for the sake of hastening death, but rather for the sake of the good those organs might do. And if that’s the case, then we get a classic case of double effect—one in which the primary intention of an action (gifting one’s organs) defines the action as morally licit despite foreseen but unintended side effects (hastening death).
As I said, in the past I have been more confident in the moral viability of Double Effect Donation. I’m less sure now. Yes, there would be practical issues with implementing Double Effect Donation, as Tollefsen outlines. We would, for starters, need to carefully revise consent practices around organ donation, to ensure that donors are aware of what they are consenting to. And we would need to put legal protections in place to ensure that the Dead Donor Rule is broken only in carefully prescribed situations—it doesn’t take a particularly dystopian imagination to see how Double Effect Donation might be abused. But these challenges are practical ones. They are surmountable. My hesitancy with Double Effect Donation has more to do with the ethical gravity of embracing it. If we get our action theory wrong, the stakes are ethically catastrophic. We end up killing for consequentialist reasons. We justify an intrinsically immoral act—killing an innocent human being—for the sake of maximizing our utilitarian calculus. That’s a category of action we should reject. By my lights, it is one of the most crucial categories of action to oppose. So, while we should continue to explore Double Effect Donation, we must do so with an extreme degree of caution. And we should not embrace it prematurely.
Where does this leave us? It leaves us with at least this: Death Revisionism—including the kind Drs. Jauhar, Patel, and Smith propose—is not an ethically viable option. Of that, I think, we can be relatively confident. Of the options that remain, however, there is not one that asserts itself as the obvious alternative. We are left with one obviously bad option. Yet until we do a lot more careful thinking, we do not have a good one.
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