“We’re Insisting That Brain Death Is Something That It Isn’t” – How Do We Determine Death?

The experience was understandably horrific for Jahi’s parents, whose account of that terrible night hints at a series of potentially preventable oversights made by the medical staff on duty at the time. However, this is not the end of the story. A week after Jahi had been declared dead, her body was still receiving life support while her family desperately sought answers to what had happened to their daughter and sister.

One of the biggest issues for her relatives was the fact that although Jahi was supposedly dead, her body was still warm and soft, and she continued to move every now and then. This, the medical staff told the grieving family, was just a series of postmortem responses in brain-dead patients, known as a “Lazarus sign”. But the family didn’t accept the hospital’s views and increasingly came to distrust their motives for wanting Jahi’s life support turned off.

This caused Jahi’s uncle to contact a personal-injury lawyer who took on their case, insisting that the doctor’s diagnosis infringed on the family’s religious beliefs: that a person remains alive as long as their heart is still beating.

Eventually, the lawyer and Jahi’s family were able to arrange for her body to be transported to a Roman Catholic hospital, St Peter’s University Hospital in New Jersey (one of two states where families can reject the diagnosis of brain death if it violates their religious beliefs). She was issued a death certificate as she left and was then attached to a portable respirator for the journey and life support when she arrived on site. Here she stayed for most of 2014 while her family continued to advocate for her life. By this point, the case had become extremely controversial and had caused a significant media backlash for all involved. By August that year, she was released again with the diagnosis of brain death, but was moved into a two-bedroom apartment where she received 24-hour care from nurses.

Over the next few years, Jahi remained in this bed and received constant attention. As time progressed, her body matured and went through puberty, and, according to eyewitness documentation, including that of the well-respected neurologist Dr Alan Shewmon, she even seemingly developed intermittent responsiveness to commands.

But was Jahi truly “alive” or “dead”? The medical community was torn. Shewmon’s testimony and video evidence were used to declare her as technically alive in a court filing that occurred in 2017. However, the Children’s Hospital Oakland stood by its original diagnosis of brain death, arguing that the video evidence was not sufficient for diagnostic purposes.

In June 2018, Jahi was officially pronounced dead after she experienced abdominal complications. She was issued a second death certificate and was laid to rest. For nearly five years, Jahi’s case had frustrated the recognized classification for determining death, and although many in the medical community believed she had indeed “died” back in 2013, the situation sewed significant doubt among some while also highlighting tensions between medicolegal practice, common sense observations, and cultural-religious beliefs. What then does this mean for brain death as the dominant factor for determining death? Is it fit for purpose, or is it time for us to find something different?

Where did it come from?

For something as commonplace as death, our understanding of how to deal with it is surprisingly varied. Throughout history, people have responded to the moment of their departure in different ways depending on time and place. It should therefore not be surprising to find that this is still the case today, and yet the idea that brain death is the way we understand the state of death is often believed to be universal. However, nothing can be further from the truth. In fact, brain death is actually quite a controversial topic in different parts of the world, some of which have refused to adopt it as the point for declaring the end of a person’s life.

How brain death reached this point is somewhat murky and potentially controversial. Throughout most of human history, determining death was quite straightforward – someone fell down and didn’t get back up. The longer this person stayed unmoving and not breathing, the more confident people could be that they had passed away. More recently, cardiovascular failure and the lack of breathing were regarded as a reliable way to quickly assess the onset of death.

From the 1960s onwards, brain death became an increasingly prominent criterion for defining death due, largely, to the advancement of medical technologies on the one hand, and the growing interest in human organ transplantation on the other.

In December 1967, the first human heart was successfully transplanted from one patient to another, in a procedure carried out by Christiaan Barnard in Cape Town, South Africa. This sparked heated debate among surgeons, especially those interested in organ transplants. Responding to this development, Harvard Medical School convened a committee in 1968 to establish new criteria for death that fit the complexities of this new technological and ethical landscape.

“There was this realization that if you wait until the heart stops beating before you remove organs for transplant, they’re not going to function as well as if you remove them while they’re still functioning and so the question that came up was how might we understand death in a way that would facilitate transplantation?,” Dr Robert Truog, Frances Glessner Lee Distinguished Professor of Medical Ethics, Anaesthesia, and Pediatrics, and Director Emeritus, Center for Bioethics, Department of Global Health and Social Medicine, Harvard Medical School, told IFLScience.

The Harvard committee, chaired by the anesthetist and medical ethicist, Henry K. Beecher, produced a report that identified irreversible coma as a new criterion of death and recommended tests to check for the absence of central nervous system activity, spontaneous movement, breathing, reflexes, and more. These tests should then be repeated 24 hours later; if their condition had not improved, then they could be declared dead and moved to the transplant table.

“I think [Beecher] was motivated around several ideas,” Truog explained, “one being that, if our brains are no longer working, is there really any point in continuing to live? There were also concerns about utilization of ICU resources for patients who didn’t have really any hope of recovering consciousness.”

To what extent Beecher was influenced by transplant opportunities has been a point of historical debate for some time, with some people playing down the weight of this factor.

“I kind of think about the timing of what happened. It was within months after that first heart transplant that [Beecher] organized the committee, and within months, came out with the Harvard report, which really laid out a blueprint for how to think about what brain death would look like, how you would make that diagnosis. So, I think it was a big motivating factor,” Truog added.

Over the next few decades, various legislators and medicolegal professionals worked to establish new definitions for brain death. In the US, the President’s Commission Report on “Defining Death” and the Uniform Determination of Death Act focused on “whole brain” for death, while the UK Conference of Medical Royal Colleges favoured “brain stem” death. Regardless of these different definitions, the principles stuck, and by the early 2000s, over 80 countries had adopted one of these definitions for brain death (though it should be stated that some countries, such as Japan, refused to accept it).

Brain death has its problems

This understanding of brain death served as “dogma” for 40 years, Truog said. However, even from its earliest days, there were some who saw some issues with it. For instance, Truog, who was a young intensive care doctor during the 1980s, noticed some discrepancies between what the medical community accepted as truth and what was happening in reality. Part of this rested on the idea that, when the brain stops working, the body loses the capacity for integrated functioning, resulting in cardiac arrest in a matter of days. In this sense, brain death wasn’t a new definition of death per se, more a new, sophisticated way to understand the process leading up to death as it had always been understood. But this was not necessarily what was happening on the ground. 

“If you’re in your 50s, 60s or 70s, you’ve probably got a lot of other medical things going on, and so this idea that that cardiac arrest quickly follows the diagnosis of brain death is largely true in that older population, but for children who don’t have other medical problems, it’s really clearly not true,” Truog told IFLScience. “And it was clearly obvious to those of us who were doing intensive care at the time that it wasn’t true and that death would follow only by us stopping the ventilator, otherwise this could go on for longer.”

Despite criticisms from some individuals or academic disciplines, such as the social sciences, brain death continued to function as the dominant paradigm until relatively recently. In 2021, the Uniform Law Commission reconvened and, for the first time, attempted to reassess the criteria for determining death. This followed a string of rare but complex cases, such as that of Jahi McMath, highlighting its limitations.

You can see this was starting to spiral in a way that was going to go down a rabbit hole that certainly the neurologist did not want, but also the entire transplantation world did not want.

Dr Robert Truog

Ultimately, the Commission’s attempts to revise the Uniform Determination of Death Act failed to deliver any meaningful changes, as its work on the subject was paused in 2023 due to a failure to gain consensus on needed revisions. The fear was that such revisions would lead to disuniformity across American states.

Part of the challenge the committee faced related to the current political and cultural divisions within the country. According to Truog, who was asked to be a consultant for their deliberations, there were conservative individuals in the proceedings who started to link brain death cases with the antiabortion argument – essentially, if a fetus has human value, then a brain-dead person does too, that it doesn’t mean they are “dead”.

“What it means is that you have a very severe neurological injury,” Truog said, explaining the conservative perspective. “You deserve the protections of people who are disabled. One of those protections is that you have a right not to be killed. And you can see this was starting to spiral in a way that was going to go down a rabbit hole that certainly the neurologist did not want, but also the entire transplantation world did not want, because we need these organs for transplantation.”

This messiness has led to a state of limbo where the existing laws continue unaltered despite the consensus that they need updating.

“We’re insisting that brain death is something that it isn’t, but for the most part, people are willing to go along with it, and the transplant world is able to move forward,” Truog added.

Death is far from certain

What should be clear by this point is that the idea that brain death is the uncomplicated boundary point between life and death is not a universal belief. Death itself is ambiguous, not so much an event but a process that is deeply social. To say that death is a social construct may make some people uncomfortable, because what can be more certain than death? But as we have seen, how we understand death and the factors that contribute to its determination have changed throughout history and are very much tied to local situations.

The case of Jahi McMath makes this abundantly clear, with those involved – doctors, carers, and the family – each asserting different beliefs and expectations about what death looks like and who gets the final say. It is also clear that this particular story, and many like it, are intimately bound up with technological advancements. It likely means we will see similar difficult questions being raised as our ability to maintain biological life continues to evolve, risking both financial and ethical costs. At the same time, the more people who are maintained on machines for long periods of time, the fewer organs are available for transplantation.

For bioethicists like Truog, these tensions highlight the role of personhood in our considerations of death. In April 2019, he gave the McGovern Lecture at Trent Semans Center for Health Education, where he quoted the views of Robert Veatch, an ethicist at Georgetown University, who defined person death as the “irreversible loss of that which is essentially significant to the nature of man.” This idea of a kind of essential characteristic of personhood is clearly absent from patients kept alive on ventilators without the possibility of recovery. And, similar to the above point, it helps us see future social and philosophical challenges in situations where someone has lost their “personhood”, but their body’s biological functions continue almost indefinitely.

I think that we’re at a point in human history where something that is so fundamental as the distinction between life and death has now become a matter of choice and uncertainty and debate.

Dr Robert Truog

Death as a social subject also expands the focus of death as a lone experience. The current clinical focus on death, especially one that involves dying in a hospital setting, is very much an individual thing. It is viewed as a binary arrangement between doctor and patient, and it is the doctor who ultimately decides when death has occurred. This clinical setting severs the individual from the social environment in which they lived. 

But as we saw with the case of Jahi McMath, a dying person is also a daughter or son, a brother or sister, a mother or father, or a grandparent. They had friends, they had associations and deep relationships that gave them meaning. All these relationships can play a role in the process of death.

For instance, a family’s cultural or religious beliefs can very much shape their expectations of what death looks like and when it occurs, especially those that distrust brain death as the dominant criterion. At the same time, there are tensions between the views of medical and legal professionals on the one hand, and the public understanding of death and the end of identity on the other.

“I think that’s the real takeaway,” Truog said. “I think that we’re at a point in human history where something that is so fundamental as the distinction between life and death has now become a matter of choice and uncertainty and debate.”

“We’ve transformed death from something that just happens naturally to something that we control, where we decide when you die, we decide when we’re going to call you dead, even if you’re not really dead. And I think that that’s very upsetting to people.”