Defining Death: The Case For Choice by Robert M. Veatch and Lainie F. Ross (2016)
[Content note: discussions of death and dying]
Under a dark and humid Singaporean sky, ambulance sirens pierced the silence of the early morning. Within the vehicle racing to Changi General Hospital lay Swenson Tan, whose motorcycle had collided with a van mere minutes before. Although his condition was critical, if the paramedics could get him there fast enough, perhaps his life could yet be saved.
But despite his prompt arrival, and the marathon six-hour surgery that followed, his prognosis was still bleak. Swenson’s head injuries were simply too severe. Two weeks later, still unable to wean him off his ventilator, and seeing no evidence of any recovery, his doctors declared him brain dead.
Swenson’s heartbroken family, however, couldn’t reconcile this declaration with the boy lying in front of them. Their boy — almost finished with national service, just beginning his career as a junior engineer — could not possibly have died. He was too young, too healthy — too full of joy and promise, to have had his future so casually snuffed out. While his heart still beat, and his hands were still warm in theirs, they clung fervently to the hope that he would return to them and fulfil the bright future he was promised.
Swenson’s parents demanded that he be given more time to show signs of improvement. Yielding to the family's pleas, the hospital staff extended the monitoring period. But after further evaluations, a set of independent neurologists only confirmed the initial findings: he did not react to sounds, or touch, or even pain. His pupils did not respond to light, and his brain scans revealed extensive intracranial haemorrhage. The conclusion was unanimous and unchanging — Swenson’s heart may still have been beating, but Swenson himself was gone.
Still, when the doctors came to collect his organs, Swenson’s mother refused to accept his fate. “It’s not your child, so you don’t understand! [...] You... keep calling and calling since last night about the organ harvesting without a word of sympathy.” She even went so far as to contact the police, reporting that the doctors wanted to murder her son and steal his organs (no officers attended). As they wheeled her son’s body away, powerless as she was to stop them, she demanded to know how the doctors could possibly have the authority to declare Swenson dead. While his heart was still beating, and while her love for him still burned, who were they to deny her hope!? “I want to know who made this law!”
Unlike many of the questions we are about to discuss, this answer is easy enough to provide: the Singaporean lawmakers who passed the Human Organ Transplant Act (1987). But I feel that Swenson’s mother’s agony raises more fundamental problems. How could these legislators possibly define someone as dead while their heart still functions? What precise criteria do doctors use to demarcate the line between life and death? In a world where technology can increasingly breathe for us, circulate our blood, and even interface directly with our brains, what does it actually mean to die?
These are the problems Robert Veatch and Lainie Ross explore in Defining Death: The Case For Choice.
The evolution of death
Before the middle of the twentieth century, a person lived if they breathed and bled; elsewise they were dead. But as Veatch and Ross point out in their opening lines, "Over the past fifty years, that has changed."
It started with mechanical ventilators. These devices, which can force air into the lungs of patients unable to breathe on their own, were originally developed to compensate for the respiratory depression caused by anaesthetics during surgery. It continued with the invention of cardiopulmonary bypass machines, capable of temporarily assuming the heart’s function by artificially circulating a person’s blood. The apex of these advancements was reached with the practice of extracorporeal membrane oxygenation (ECMO), which involves shunting a patient’s blood into tubes, pumping it through an artificial lung, and then returning it back into the patient. Nowadays, when a person can have their heart and lungs stopped, operated upon, and potentially even replaced by a transplant from another person, the union between death and the cardiorespiratory organs has become increasingly divorced.
In response to these technological advancements, the medical and legal communities slowly reevaluated their definition of death. In 1959, Mollaret and Goulon introduced the notion of “le coma dépassé”, or ‘a state beyond coma’, and in doing so were the first to suggest death could be determined based on loss of brain activity alone rather than cardiorespiratory function. This concept of ‘brain death’ gained traction in the United States following the Harvard Ad Hoc Committee’s establishment of the ‘Harvard criteria’ in 1968. These criteria dictated that death should be declared if a patient was: unresponsive, unmoving, had no spontaneous breathing, and exhibited no detectable brain waves on EEG. With the publication of the committee’s report, brain death gained the formal support it needed to begin supplanting the older cardiorespiratory view.
As a result, the 1970s saw some US states start to change their laws to allow ‘irreversible loss of brain function’ to be a valid reason for a doctor to pronounce a patient’s death. This became systematised with the President’s Commission release of the Defining Death report in 1981. Particularly influential within this document was a proposal that each state legislate a statute, termed the Uniform Determination of Death Act (UDDA), which holds:
An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.
At first glance, the definition appears robust enough for widespread adoption. It garnered endorsements from prestigious bodies like the American Medical Association, American Bar Association, and Uniform Law Commissioners, among others, suggesting a consensus on its reliability and relevance. This support facilitated its acceptance not only across the United States but also around much of the world. Unfortunately though, despite its widespread popularity, Veatch and Ross feel compelled to point out that it has substantial flaws (at least from a theoretical, philosophical perspective).
First, it’s a bit odd that there are two wholly separate criteria for declaring death — one rooted in cardiorespiratory functions and the other in brain activity — where either alone is sufficient to have someone declared dead. In the age of ECMO, isn’t the first definition obsolete? When someone’s heart and lungs failed permanently weeks ago, yet through the technological wizardry of ECMO their brain has been kept in a perfectly functioning state, do we really want to arguably be able to declare them dead?
Second, the term ‘irreversible cessation’ itself is ambiguous. Does it refer to cessation that could never, under any circumstances, be reversed, or does it mean irreversibility only given the current medical technology available to the patient? If it's the latter, this can lead to peculiar scenarios. For example, a person who has a cardiac arrest in a remote location might be declared dead under these standards, whereas the same person might well be deemed alive and worthy of resuscitation attempts in a well-equipped urban hospital. But, if 'irreversible in principle' is the standard, current thresholds for switching off life support may sometimes risk prematurely declaring people dead who could otherwise be revived by future medical advancements.
Because of these problems (and more I’ve omitted), Veatch and Ross think that, despite the legal consensus, the correct definition of death is still up for debate. Their critique is echoed by others in the field as well. As a 2009 editorial in Nature stated, "physicians know that when they declare that someone on life support is dead, they are usually obeying the spirit, but not the letter, of this law. And many are feeling increasingly uncomfortable about it." While we’ll discuss the finer technical reasons behind these concerns shortly, for now it's simply important to recognize that the process of declaring death is sometimes far more complicated than the simplified versions portrayed in medical dramas.
If Veatch and Ross think the current definition is flawed, then what alternatives do they propose? As they see it, there are at least four main definitions worth exploring:
- The separation of body and soul (soul departure)
- The cessation of the flow of vital bodily fluids (circulatory)
- The loss of all functions of the brain (whole-brain death)
- The loss of only particular brain functions (higher-brain death)
Correspondingly, a step-by-step walkthrough of the pros and cons of each of the circulatory, whole-brain, and higher-brain concepts of death is what comprises the bulk of the book. Unfortunately, whether it is because they wish to summarily dismiss soul-based explanations, or because they feel unqualified to assess theological matters, Veatch and Ross decline to examine the soul departure view. But apart from this omission, the book otherwise provides a comprehensive and unsettling overview of how the debate on defining death is still very much contentious.
Candidates for death
In December 2013, twelve-year-old Jahi McMath suffered severe bleeding after sleep apnea surgery at an Oakland hospital, leading her to suffer anoxia and subsequent brain death. As in Swenson’s case, Jahi was pronounced dead after examination by a set of doctors, including an independent neurologist. And again as per Swenson’s case, her mother refused to accept a declaration of death based on neurological criteria. While her daughter’s heart was still beating, even if only thanks to life support, she was convinced that Jahi was not dead.
What was different from Swenson’s case, though, was the legal system’s sympathies towards Jahi’s family’s feelings. Through bringing a claim before a Californian court, Jahi’s mother gained custody of her daughter’s body while it was still connected to a ventilator. This legal intervention resulted in Jahi’s body being maintained on life support for another four-and-a-half years, before finally succumbing to organ failure.
On the basis of cases like these, along with survey data, Veatch and Ross claim that, "it seems likely that about 10 percent of the US population insists on some version of a circulatory definition of death." For these people, the definition of death remains the traditional one — a person isn’t dead so long as their lungs breathe and their heart beats, whether or not this happens only thanks to mechanical assistance. Despite the ascendancy of brain death, these individuals, communities, and religious groups — including most prominently some Orthodox Jews — continue to hold to this classical view.
Still, in the twenty-first century, a cardiorespiratory definition of death is a decidedly minority position. Nowadays, most people place greater emphasis on the cognitive abilities and emotional experiences that brain functions enable, rather than just a beating heart. Their conviction on this matter would probably strengthen further still if they understood that isolated hearts will beat all on their own, so long as they’re supplied with oxygenated blood. Unless one is willing to seriously consider the possibility that an isolated heart can constitute a person’s survival all by itself, or whether an ECMO machine should be counted as alive, then Veatch and Ross suggest we should accept “it is the brain’s function that is critical, not the beating heart.”
Correspondingly, when wanting to ascertain whether a patient has died, doctors today mostly focus on whether ‘irreversible cessation of all functions of the entire brain’ has occurred, i.e. the ‘whole-brain’ definition of death. When considering the defining features of a person — their memories, personality, consciousness — it’s the loss of the brain that results in their destruction. Although people can certainly suffer some amount of brain damage without dying, it seems definitive to most that total brain destruction necessarily entails death.
But, despite the whole-brain view being better than a circulatory definition, it still has serious flaws. The main issue hinges over the legal requirement that death requires the loss of all brain functions. To see why this is a problem, consider the hypothalamus: a nugget-shaped region at the base of the brain that regulates instincts, hormones, and other basic bodily functions. Contrary to the legal requirements of the whole-brain definition, the hypothalamus is often still mostly working in patients declared brain dead. Additionally awkward is that there are also often other isolated ‘islands’ of preserved neural tissue in brain dead patients who have otherwise lost all observable brain functions.
While doctors are well aware of the gap between the written letter of the law and their actual practice (as per the Nature editorial I quoted above), it doesn’t stop them from issuing tens of thousands of death certificates per day. Why are they so unconcerned? Because routine examinations can uncover sufficiently extensive brain damage to indicate that patients have no hope of functional recovery, even if strictly speaking they do not meet the criteria for whole-brain death.
The following tests for residual brain function are commonly used, though there is some variation between states and countries. If it is clearly apparent that no brain function could remain — for instance, if the body has been completely destroyed or is noticeably decaying — then no formal testing is required. Otherwise, doctors will attempt to detect any remaining signs of cardiorespiratory and neurological activity. They will look for evidence of breathing or heartbeat, test for responses to painful stimuli by pressing on the patient's forehead, and examine pupillary reactions to light. If these indicators are absent, “whole-brain” death is assumed, and a declaration of death is made.
These straightforward tests are considered reliable indicators of death because they probe the functionality of the brainstem. Structurally and functionally primitive, the brainstem connects the spinal cord to the brain's higher areas, managing vital functions such as respiration, cardiac rhythm, and overall brain alertness. Extensive damage to the brainstem results in a permanent loss of consciousness and respiratory function, thereby serving as an indirect method to assess total brain death.
Yet, just as physicians might disregard ongoing hypothalamic activities as constituting survival in individuals with brainstem damage, some philosophers advocate for considering certain patients deceased even if partial brainstem activity persists. Occasionally, despite extensive brain damage, enough of the brainstem may be spared to allow spontaneous breathing, even while enabling little else. The ‘higher-brain’ definition of death contends that in such cases, the presence of only basic functions like breathing or a gag reflex is as irrelevant to determining human life as is the growth of fingernails. Proponents of this view argue that the absence of cognitive functions, memory, self-awareness, and any capacity for experience, necessarily signifies death. They assert that since higher brain areas like the cortex are responsible for these capabilities, the destruction of the cortex alone should be considered sufficient to define death.
Thus far, no legal or medical bodies have officially supported the concept of higher-brain death, despite implicit endorsement from actual medical practice. This hesitancy stems from several factors. Primarily, many members of the general public find it unsettling to consider an individual who breathes spontaneously as already deceased. Additionally, diagnosing higher-brain death is notably more challenging than determining brainstem death - as without a universally accepted understanding of consciousness, it remains difficult to distinguish between patients whose brain damage leaves them irreversibly unconscious from those who are behaviourally unresponsive yet may still have some degree of awareness.
Without more precise knowledge of the brain mechanisms related to consciousness, or a shift in the importance placed on spontaneous breathing, broad adoption of the higher-brain definition of death is unlikely for now. The prevailing practice of requiring brainstem destruction, rather than cortical loss alone, is thus more a practical decision than a philosophically robust one. Physicians are charged with the societal role of determining death, and opt for uncontroversial and conservative criteria while being mindful of cultural and religious sensitivities. They also know people are much more upset by false declarations of death than vice versa. Consequently, they lean towards the whole-brain rather than the higher-brain view, favouring a more cautious approach.
Yet, this conservative stance is not without its critics, as it potentially leads to more deaths than it prevents. The reluctance to recognize patients with higher-brain death as deceased means that viable organs are left in permanently unconscious individuals while conscious patients die who otherwise would live. This occurs because organ transplant practices adhere to the ‘dead donor rule’, which requires a person to be declared dead before life-sustaining organs can be extracted from them. Some argue that it is unethical to maintain care for those who will never regain consciousness when their organs could save active, conscious individuals. Others view organ harvesting from such patients as tantamount to murder. Additionally, there are concerns that even if there was medical consensus on higher-brain death, public support would have to be clear before such a policy is implemented, lest we see a net loss in organ donations due to potential donors withdrawing consent over fears of premature death declarations. While this debate remains unresolved, there is currently no indication that any jurisdiction is considering shifting from the whole-brain to a higher-brain view anytime soon.
So in the end, none of these definitions provide practical diagnostic criteria while fully satisfying philosophical, ethical, and cultural concerns. As a result, without a single, broadly-accepted definition, we are left with two options. The first is to hope that sufficient effort placed into philosophical and medical research will someday soon reveal a single, correct, universally applicable definition of death. The second is to give up, and in accepting failure, take what should be the default position of any liberal society: leave it up to individuals to decide for themselves. Given Veatch and Ross ultimately think “These are not not neurological issues; they are social, normative issues about which all citizens may reasonably voice a position”, let’s consider their case for choice.
The case for choice
According to Veatch and Ross, this definitional problem fundamentally stems from a fact-value distinction. Medical science can establish facts like ‘a heart will beat so long as it is supplied with oxygenated blood’ or ‘damage to the medulla will cause a person to stop breathing’. However, deciding when to declare someone dead involves weighing various capabilities and cultural values, making it a subjective and value-laden judgement.
As with all value judgments taking place in a democratic, pluralist society, Veatch and Ross argue that we should allow people to define what death means for themselves. If one person consents to having their organs donated should they ever become irreversibly unconscious, let them ascribe to a higher-brain death definition. If another individual is firm in their religious conviction that they live so long as their heart beats and their body draws breath, then let them be treated under a circulatory view. For Veatch and Ross, the most vital sign to consider is not a patient’s ECG or EEG, but their own personal beliefs.
Obviously, these choices need to be made within practical limits. On the one hand, respecting the bodily autonomy of clearly rotting corpses would result in public health concerns. On the other hand, allowing conscious, verbal people to declare themselves already dead (such as in Cotard’s delusion) would be to neglect potentially treatable mental health conditions.
They acknowledge other legal and ethical concerns too. One person may push for their brain-damaged father to be declared dead, not out of concern for their parent’s best interests, but out of a desire to collect on their inheritance. Another may try to keep their mother on life support for longer than she would have wanted, so as to continue collecting on her pension.
But Veatch and Ross think these abuses are preventable with robust legal frameworks, and that the benefits from empowering people to make choices about their own mortality overwhelm the complications that could arise. When all the factors are considered, Veatch and Ross maintain that “granting individuals a limited range of discretion within the limits of reason seems to be the only defensible option.”
This is certainly a noble sentiment. I, for one, am all for liberal values and empowering patients. All of my natural tendencies would lead me to find this proposal compelling, if not for the fact that it is wrong. Because as much as I support giving people choices, I think Veatch and Ross have given up on properly defining death a little too early. If only they were to look a little harder at the options they’ve neglected, I think they would see there is a singularly correct definition after all.
Death is the destruction of a soul
Imagine, after receiving the worst phone call of your life, you arrive at a hospital to find your spouse lying unresponsive on a bed. Surrounded by a tangle of wires and tubes, they breathe only with the help of a ventilator. The doctors state they are sorry to inform you that your spouse has suffered brain death following a sudden cardiac arrest, and that they meet the criteria to be legally pronounced dead.
However, the medical team presents you with another option. Thanks to recent medical advancements, they can now transplant a brain from a recently deceased donor into your spouse’s skull so as to replace their irreparably damaged brain. The doctors explain that, while such transplants are more complex than those involving kidneys and hearts, they’ve achieved a reasonable success rate with this new procedure.
Still, the doctors caution you about potentially significant side effects. Your spouse will lose all their memories and undergo substantial changes in their personality. They won’t recognize you anymore, and their feelings towards you may change dramatically. But despite these profound changes, they say, “performing the procedure means your spouse could survive. That’s what’s most important, right?”
After all, according to any of the definitions we’ve previously looked at, the doctors are right in saying that your partner’s life would be saved. Their heart and lungs would continue to function. The donor brain would ensure a restoration of their body’s neural functions. Once the surgery was complete, their tongue would speak, their ears would listen, and all higher brain functions would be present once more. But despite all this, I doubt anyone believes their partner would survive such a procedure.
As I see it, this hypothetical procedure shows how decades of medical and technological advancements have led us back to our historical starting point: a person dies when they lose their soul. Now, I don’t mean this to be a metaphysically immaterial substance that escapes from a person’s body when they take their final breath. Descartes never did manage to explain how an immaterial soul can interact with the physical flesh, and I don’t think a compelling solution has been found in the intervening centuries. Instead, I mean to say that a person dies when the essence of what makes them who they are — the soul that constitutes the core of their unique being — is irretrievably lost.
This is the philosophical position of defining death as ‘the irreversible loss of personal identity’ (first formally described by Green and Wikler in 1980). By this definition, a person does not die once their heart stops or their brainstem fails to command their lungs to breathe. Nor can the presence of any minimal neural activity, such as that from a lone functioning neuron, be taken as indicative of life. Instead, this perspective maintains that an individual survives only so long as their personality, memories, desires, and other fundamental characteristics that constitute their identity, are sufficiently intact. Or in other words, a person dies only when these essential elements of their identity are permanently lost.
Today, when ECMO can keep a person alive long after their heart and lungs have failed, it is broadly acknowledged that 'heart death' is different from true death. In this same vein, the personal identity definition draws a clear distinction between 'brain death' and actual death. The reasoning behind this was clearly articulated, ironically, by one of the best known defenders of the whole-brain view back in 1998: “the idea of a mechanical, electrical, or synthetic brain … would force us to alter completely our concepts of death”. After a quarter-century has passed, this time is increasingly upon us. The brainstem’s role in controlling blood pressure can now be replaced by a neural implant. Hippocampal prostheses to improve memory are already showing signs of promise. Sure, these sorts of synthetic technologies are still primitive by the standards of natural human biology. But with enough time, effort, and money, neural tissue will be rendered as replaceable as hearts and lungs are already becoming today. In the long run, the only thing biomedical companies will be unable to substitute is our soul.
Still, like the other definitions, the personal identity view is not without its drawbacks. As the transplant specialist Robert Truog wrote in an article titled Brain Death — too Flawed to Endure, Too Ingrained to Abandon, “neither the traditional understanding of brain death, nor alternatives like the higher brain standard, fulfil necessary requirements of coherence and acceptability.” And despite its much greater conceptual coherence, the personal identity definition has unpalatable implications of its own.
For one, as per the higher-brain view, it implies that individuals who have suffered sufficient brain damage to leave them permanently unconscious, but whose brainstems are still intact enough to drive spontaneous breathing, may already be dead. Even though this is a position that over fifty percent of doctors privately endorse, this is not something they think the public is ready to accept. Even more controversial, though, is that the personal identity view suggests patients who have overwhelmingly lost their long-term memories and suffered extensive alterations to their personalities, as can happen in advanced dementia, may have already died even while some level of consciousness is still present. Though a proponent of this view would be quick to point out this doesn’t mean we should disregard the welfare of the being that remains — even if they’re no longer the person that existed before — this is a view that many are not yet willing to entertain.
But whether doctors state it or not, I strongly suspect the personal identity perspective is already the view to which most of them subscribe. Sure, for now they publicly stick with the whole-brain definition, quietly hoping the public won’t notice that everyday practice already requires them to frequently violate the law. Yet as technology develops over the years to come, so too will the ‘accepted medical standards’ for determining death. If companies like Neuralink ever develop neural implants that can keep someone with a brainstem stroke alive without radically altering their personality in the process, don’t expect the concept of ‘brain death’ to survive. Similarly, society’s growing interest in the eventual possibility of mind uploading reflects the increasingly popular belief that a person survives not through the persistence of their biological brain, but instead through the continuity of their unique psychological attributes. Should the day ever come when this technology actually becomes feasible, the current legal definitions of death will seem as archaic as the theory of bodily humours to modern medical practice.
Veatch and Ross argue that there is an unbridgeable distinction between facts and values in matters of defining death. But while I certainly wouldn’t have felt comfortable telling Swenson’s distraught mother she was wrong about her son still being alive, let alone that I’ve come to take his organs, I don’t think her feelings had any sway over the metaphysical status of his survival. Whether it be helping patients to pursue active treatments irrespective of a poor prognosis, or enabling people to choose comfort over continuing curative care, consent and patient choice should always be key concerns in medicine. But as much as I think we should be free to make decisions about our own end-of-life care, I do not think reality grants us the freedom to choose what constitutes our end. Rather, it works the other way around. It’s not that we cease to exist based on definitions of our own choosing, but that our final end comes when that which uniquely defines us ceases to exist.