Category: Consciousness

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What does ‘brain dead’ really mean?

— The battle over how science defines the end of life


The concept of brain death is facing its greatest challenge in the United States in decades.

Ideological differences threaten to muddy the definition of death in the United States — with potentially negative consequences for clinicians and people awaiting organ transplants.

By Max Kozlov

Dead in California but alive in New Jersey: that was the status of 13-year-old Jahi McMath after physicians in Oakland, California, declared her brain dead in 2013, after complications from a tonsillectomy. Unhappy with the care that their daughter received and unwilling to remove life support, McMath’s family moved with her to New Jersey, where the law allowed them to lodge a religious objection to the declaration of brain death and keep McMath connected to life-support systems for another four and a half years.

Prompted by such legal discrepancies and a growing number of lawsuits around the United States, a group of neurologists, physicians, lawyers and bioethicists is attempting to harmonize state laws surrounding the determination of death. They say that imprecise language in existing laws — as well as research done since the laws were passed — threatens to undermine public confidence in how death is defined worldwide.

“It doesn’t really make a lot of sense,” says Ariane Lewis, a neurocritical care clinician at NYU Langone Health in New York City. “Death is something that should be a set, finite thing. It shouldn’t be something that’s left up to interpretation.”

Since 2021, a committee in the Uniform Law Commission (ULC), a non-profit organization in Chicago, Illinois, that drafts model legislation for states to adopt, has been revising its recommendation for the legal determination of death. The drafting committee hopes to clarify the definition of brain death, determine whether consent is required to test for it, specify how to handle family objections and provide guidance on how to incorporate future changes to medical standards. The broader membership of the ULC will offer feedback on the first draft of the revised law at a meeting on 26 July. After members vote on it, the text could be ready for state legislatures to consider by the middle of next year.

But as the ULC revision process has progressed, clinicians who were once eager to address these issues have become increasingly worried.

Fuelling their fears is a rising tide of political polarization and mistrust of scientific expertise. Some clinicians following the ULC discussions say that the idea of brain death itself is facing its greatest challenge since its conception in the 1960s. The outcome could have serious implications for intensive care units (ICUs) across the United States and might affect the availability of vital organs for transplant. And although few expect the ULC’s recommendations to erase the idea of brain death, some observers fear that the doubts and narratives sown throughout the process could have a lasting effect on state laws and on public perception.

“I thought this would be an upgrade, and it’s completely fallen apart from that perspective,” says Robert Truog, a bioethicist and paediatrician at Harvard Medical School in Boston, Massachusetts, who is not a voting member of the ULC committee, but has watched its progress closely. “As soon as we talk about the deeper issues, the profound disagreement of some members of the committee become apparent, and you reach a standstill.”

Redefining death

Current legal definitions around the world generally allow for two types of death: when heart and respiratory function stop irreversibly, or when crucial functions of the brain are lost. Historically, these two have been closely entwined: stop the heart, and the brain is dead in minutes. Stop the entire brain functioning, and the heart stops beating. But medical advances in the 1950s, such as modern ventilators, meant that the two types of death could be separated.

Such technologies, along with improved methods of measuring brain function, prompted the formation of a committee at Harvard University in Cambridge, Massachusetts, in 1968. The members developed a definition of irreversible coma or brain death that was controversial at the time.

In 1981, prompted by a presidential commission on the topic, the ULC codified this form of death into a model law called the Uniform Determination of Death Act (UDDA), stating that a person can be considered dead when there is an irreversible cessation of circulatory and respiratory function or of all functions of the entire brain, including the brainstem. The Harvard committee and the UDDA proved influential: most countries in the world followed suit with their own laws adopting brain death.

People who are in a coma, or who have unresponsive wakefulness syndrome, or locked-in syndrome are not brain dead. Not all functions of their brains have stopped, and some might be able to breathe without the assistance of a ventilator, show signs of wakefulness or have intact reflexes (see ‘A scale of consciousness’).

A SCALE OF CONSCIOUSNESS. Chart shows various diagnoses based in part on levels of cognitive and motor impairment.
Source: J. L. Bernat Annu. Rev. Med. 60, 381–392 (2009)

Today, although brain death makes up just 2% of adult deaths and 5% of childhood deaths in hospitals in the United States, it tends to garner outsized attention from the media and in the law. Erin Paquette, a paediatrician and bioethicist at Northwestern University in Evanston, Illinois, says that’s because the physical appearance of a person who is brain dead often doesn’t line up with people’s concept of death. Hooked up to a ventilator, a person who is brain dead might look like any other individual in an ICU.

This can make it difficult for clinicians to communicate with family members about brain death, especially when the law lags behind scientific understanding. This happened in McMath’s case. Although she never definitively regained consciousness or the ability to breathe on her own, she began puberty and had her first menstrual period — a sign that a small region of her brain called the anterior hypothalamus, which helps to control the body’s hormones, might have been active.

This realization prompted her mother to sue the state of California in a bid to erase the death certificate there because not “all functions of the entire brain” had ceased as the UDDA dictates. Using a strict interpretation of the law, McMath’s mother might have been right, says James Bernat, a neurologist at the Dartmouth Geisel School of Medicine in Hanover, New Hampshire, even though it wasn’t a sign that the girl would recover. The anterior hypothalamus, Bernat says, receives blood through a different supply from the rest of the brain, so some function might be preserved in a small subset of people who have been declared brain dead. (McMath’s heart stopped in June 2018, at which point she was issued a second death certificate; her mother withdrew the lawsuit shortly afterwards.)

Language tweaks

Clinicians have called for changes to the language of the UDDA, hoping to clarify which brain areas are relevant to recovery. Other countries, such as the United Kingdom and India, define brain death much more narrowly than the United States, focusing not on the entire brain, but on the brain stem, which is necessary for essential functions such as breathing, swallowing and maintaining a heartbeat. The United Kingdom goes one step further by not separating the ways that death happens: all deaths happen when brainstem function is lost.

Truog supports this simplified system, which Canada adopted in May. But Bernat says it’s unlikely that the United States will adopt this standard: “If the ULC is going to do anything to the UDDA, they want to just tweak it,” he says. Nevertheless, he hopes that the revised law will address how to interpret residual activity in areas of the brain that are not linked to consciousness or breathing.

A silhouetted Nailah Winkfield wiping tears from her eyes. Behind her is a projected image of her smiling daughter
Nailah Winkfield appears at a news conference in 2018 to discuss the death of her daughter, Jahi McMath.

Other language changes are more subtle. Some clinicians have been calling to amend the law so that it refers to a ‘permanent’ loss of brain and heart function instead of an ‘irreversible’ one. The argument is that current tests for death do not evaluate reversibility, but rather permanence. Irreversibility, clinicians say, is a much higher standard to meet, and would require them to wait for hours to prove that they cannot restart heart or brain function. And even if it were possible to restore some functionality, some have said it might not be wise or even ethical to do so.

The need to address the language about irreversibility has been made more urgent thanks to research by Nenad Sestan, a neuroscientist at Yale University in New Haven, Connecticut. He and his colleagues pumped a blood substitute through the bodies of pigs and restored cellular function in some organs1, including the brain2, hours after the animals were slaughtered. They were careful to note that although cells might be metabolically active, this does not translate to organ function. “We might one day be able to reverse things we used to say were irreversible, and ultimately what we care about is permanence,” says Alex Capron, a medical ethicist and specialist in health policy at the University of Southern California in Los Angeles, who helped to direct national efforts to define death in the 1980s.

These language discrepancies mean that guidelines put out by organizations such as the American Academy of Neurology (AAN), in Minneapolis, Minnesota, outlining what physicians should test for when declaring brain death don’t line up with the UDDA.

Individual hospitals, too, have their own determination-of-death policies and procedures that might differ from those put out by the AAN. Currently, the UDDA states that physicians ought to use “accepted medical guidelines” as the basis of their determination, but that leaves room for them to use different medical organizations’ guidelines, and ones that are outdated.

In 2016, David Greer, a neurologist at Boston Medical Center, and his colleagues were surprised to find substantial differences when they analysed nearly 500 hospitals’ policies to see whether they adhered to the AAN’s guidelines3. They found that most clinics did not require someone with neurology experience to determine brain death, and more than one-quarter didn’t require physicians to test for conditions that can mimic brain death, such as abnormally low blood pressure or hypothermia.

New AAN guidelines are coming later this year, says Greer, who co-authored them. The revision will standardize death determination between adults and children to make the concept easier for people to understand, he says. Greer and others are calling for the UDDA to specify which medical guidelines to rely on and a process by which states can incorporate newer standards into practice.

Added tensions

But some are afraid that the time is not right to update the UDDA. Lainie Ross, a paediatrician and bioethicist at the University of Rochester in New York, says that when she heard this process was opening up, she felt uneasy. “It’s not that I think what we have is perfect,” she says, “but sometimes, perfect is the enemy of the good.”

Ross says her fears have been borne out — and many other medical professionals who spoke to Nature agree that the ULC discussions so far have not been as productive as they would have liked.

One concern is a lack of scientific expertise. The ULC committee that will ultimately decide on the final text of the revised UDDA consists of 15 voting members, all of whom are attorneys, and none of whom has direct experience treating people with severe brain injury.

One of the commissioners is James Bopp Jr, who serves as the general counsel for the anti-abortion organization the National Right to Life Committee in Washington DC. He says that he publicly supported the UDDA in the 1980s, but has changed his mind in the past few years and no longer thinks that brain death constitutes biological death. He now argues that even if a person has no chance of recovery, they still have rights.

So far, Bopp’s efforts to remove brain death from the UDDA have not succeeded. But although the concept of brain death will probably remain in the United States, the ULC might approve bracketed text, which serves as an optional recommendation for state legislatures as they consider revising their laws. This bracketed text could include a clause similar to New Jersey’s current law, allowing people to object to a diagnosis of brain death for reasons such as religious beliefs.

Many agree that it’s important to include language to handle objections and accommodations, but allowing for such opt-out clauses in the UDDA has split researchers. Truog is in favour of them, adding that they are the only sure-fire way to stop the deluge of lawsuits that threatens to undermine public acceptance of brain death. But Ross says that consistency is paramount, so she would prefer that either no states have an opt-out clause, or every state has one — to avoid the situation in which someone is considered alive in one state but dead in another.

To add to the tension, people who are brain dead represent most deceased organ donors in the United States (see ‘Organ-donor dilemma’), meaning that any changes to how death is determined will also have knock-on effects on the organ waiting list — which currently stands at more than 100,000 people. The worry is that with more people refusing to accept a determination of brain death, the waiting list could grow substantially, and ICUs could be filled with people who will never recover.

ORGAN-DONOR DILEMMA. Graphic shows the rise in organs transplanted from US donors who have been declared brain dead.
Source: Organ Procurement and Transplantation Network (OPTN)

Truog says that New Jersey has had its opt-out clause for years, and it has neither massive organ shortages nor ICUs filled with people who are brain dead. But Capron cautions that expanding opt-outs for religious reasons to many states would be venturing into uncharted territory. And signalling that brain death isn’t universally accepted could “have an effect on people who would not have gone into it having any doubts”, he says. The logistics of organ transplantation also become sticky in this scenario: organ-transplant registries have become more national. Higher opt-out rates could pose an obstacle if one state’s population is providing fewer organs to the registry but still requires the same number, Ross says.

Exploring other options

The outcome of the UDDA revision process is still largely unknown. The ULC could recommend leaving the 1981 UDDA intact. In that scenario, individual state legislatures could still vote to revise their laws in any way that they see fit, but it would be without an explicit recommendation from the ULC. If drafting continues as planned, the full ULC will vote on the revised UDDA at its summer 2024 meeting.

Beyond revising the UDDA, there are other, more systemic, ways to build public trust in the concept of brain death, Paquette says. One example is more uniform and robust medical training: because brain-death determinations are relatively infrequent, many neurology residents in the United States finish their training without witnessing a single brain-death examination4. This can result in less uniformity between clinicians and poor communication with the family or carers of a person with a devastating brain injury. Students need more practice in communicating diagnoses and potential outcomes with the family or carers of a person with a devastating brain injury, Paquette says.

“It’s helpful to outline what the death based on neurologic criteria process will look like,” she says. “And it’s important to acknowledge that what someone is seeing might not match up with their notion of death.”

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Why Dying People Often Experience a Burst of Lucidity

— New research shows surprising activity levels in dying brains and may help explain the sudden clarity many people with dementia experience near death

By Jordan Kinard 

Long the fixation of religions, philosophy and literature the world over, the conscious experience of dying has recently received increasingly significant attention from science. This comes as medical advances extend the ability to keep the body alive, steadily prying open a window into the ultimate locked room: the last living moments of a human mind.

“Around 1959 humans discovered a method to restart the heart in people who would have died, and we called this CPR,” says Sam Parnia, a critical care physician at NYU Langone Health.  Parnia has studied people’s recollections after being revived from cardiac arrest—phenomena that he refers to as “recalled experiences surrounding death.” Before CPR techniques were developed, cardiac arrest was basically synonymous with death. But now doctors can revive some people up to 20 minutes or more after their heart has stopped beating. Furthermore, Parnia says, many brain cells remain somewhat intact for hours to days postmortem—challenging our notions of a rigid boundary between life and death.

Advancements in medical technology and neuroscience, as well as shifts in researchers’ perspectives, are revolutionizing our understanding of the dying process. Research over the past decade has demonstrated a surge in brain activity in human and animal subjects undergoing cardiac arrest. Meanwhile large surveys are documenting the seemingly inexplicable periods of lucidity that hospice workers and grieving families often report witnessing in people with dementia who are dying. Poet Dylan Thomas famously admonished his readers, “Do not go gentle into that good night. Rage, rage against the dying of the light.” But as more resources are devoted to the study of death, it is becoming increasingly clear that dying is not the simple dimming of one’s internal light of awareness but rather an incredibly active process in the brain.

What is terminal lucidity?

For decades, researchers, hospice caregivers and stunned family members have watched with awe as people with Alzheimer’s or other forms of dementia suddenly regain their memories and personalities just before death. To their family members it might seem like a second lease on life, but for many experienced medical workers, it can be a sign the end is near. Christopher Kerr, chief executive officer and chief medical officer at the Center for Hospice and Palliative Care in Buffalo, N.Y., has studied the lucid visions of several hundred terminally ill people. He says these events “usually occur in the last few days of life.” Such “terminal lucidity” is defined as the unexpected return of cognitive faculties such as speech and “connectedness” with other people, according to George Mason University’s Andrew Peterson, a researcher of bioethics and consciousness who co-authored a study of the phenomenon commissioned by the National Institutes of Health.

This connectedness goes beyond the return of lost communication ability and situational awareness. “One thing that seems to be quite profound for family members who observe lucidity is something we call the ‘old self’ emerging,” Peterson says. “There seems to be clear evidence that they’re aware not merely of their surroundings … but additionally understanding what their relationships to other people are”—be it the use of a nickname or a reference to a longstanding inside joke.

As surprising as these events might seem, they are quite common. “Our study wasn’t a prevalence study,” says Jason Karlawish, a gerontologist at the Penn Memory Center and senior principal investigator of the NIH study. Nevertheless, he adds, “what we found is lucidity was more common than it was the exception in dementia patients, which would suggest that the idea of it being terminal is not entirely correct.” Instead he suggests that episodes of lucidity should be seen as part of the “disease experience” rather than as aberrant events. “We’ve actually found that a variety of these episodes occurred months, even years, before the person died,” Karlawish notes. Even so, many experts including Kerr and Parnia agree that most of these episodes are associated with the approach of death. “It’s almost like they’re preparing themselves to die,” Parnia says.

The potential implications of these widespread, temporary cognitive resurgences are profound. “It suggests there may be neural networks that are remaining, and/or pathways and neural function, that could help potentially restore cognitive abilities to individuals we otherwise think are permanently impaired,” Peterson says.

Nevertheless, research into this phenomenon is still in its early phases. “We don’t actually know what’s going on in the brain during the dying process that may in some way connect to these episodes,” Peterson says. Despite this uncertainty, other research into brain activity near or at the time of death could provide scientists and clinicians greater insight into some of the processes occurring in the diseased and dying brain.

What happens in the brain as people die?

In a study published in Proceedings of the National Academy of Sciences USA in May, researchers at the University of Michigan observed a surge of organized brain activity in two out of four comatose people who were undergoing cardiac arrest after being removed from life support. This work built on more than a decade of animal research, including a 2013 PNAS study that revealed a similar surge in synchronized brain activity in rats exposed to a cardiac toxin and a 2015 study in which rats were killed by asphyxiation. In all of these investigations, the researchers found that gamma-wave activity surged within the first few minutes of cardiac arrest and then ceased. Gamma waves are a frequency of brain wave typically associated with wakefulness, alertness and memory recall.

Jimo Borjigin, a neurologist and an associate professor of molecular and integrative physiology at the University of Michigan, was involved in all three studies. The surge of gamma waves in dying subjects was particularly intense in a brain region Borjigin refers to as the “posterior cortical ‘hot zone,’” located near the back of the skull. Some other researchers believe this region may also be essential to conscious experience. The parts of the brain in this area are related to visual, auditory and motion perception—a phenomenon Borjigin believes is involved in the out-of-body experiences reported by people who come close to death and recover. She adds that gamma-wave activation patterns akin to those observed in the comatose people are associated with activities that include the recognition of a familiar image—such as a human face—in healthy people.

In both the human and animal studies, the subjects’ brain showed a spike in activity after the sudden reduction of oxygen supply, Borjigin says. “It starts to activate this homeostatic mechanism to get oxygen back, either by breathing harder or making your heart beat faster,” she adds. Borjigin hypothesizes that much of the surge in more complex brain activity observed in humans and animals undergoing cardiac arrest is also a result of the brain attempting to reestablish homeostasis, or biological equilibrium, after detecting a lack of oxygen. She further speculates that these survival mechanisms may be involved in other changes in cognition surrounding death. “I believe dementia patients’ terminal lucidity may be due to these kinds of last-ditch efforts of the brain” to preserve itself as physiological systems fail, Borjigin says.

NYU Langone’s Parnia agrees that the brain’s reaction to the loss of oxygen is at least partially responsible for lucid experiences surrounding death. Between 2017 and 2020 Parnia led a study called AWARE II, in which researchers monitored the brain activity of more than 500 critically ill people in the U.S. and U.K. who were receiving CPR. The patients were exposed to audiovisual stimuli while undergoing CPR to test their memory of events after cardiac arrest. Those who survived were later interviewed about how aware they were during the resuscitation process. According to Parnia, one in five survivors reported lucid experiences that occurred after their heart stopped. The AWARE II team also observed an unexpected spike in brain activity during CPR, he says. “Within 20 seconds of cardiac arrest, the brain flatlines,” Parnia says. Yet “usually within five minutes—but it could be longer—we’re seeing a reemergence of a transient period of brain electricity.” He adds that the frequencies of brain activity observed are similar to those associated with conscious experience.

Parnia believes the dying brain loses the usual suppression mechanisms that allow us to focus on individual tasks during our day-to-day lives. “When you die, your brain is deprived of oxygen and nutrients, so it shuts down,” Parnia says. “This shutting down process takes away the brakes…, and suddenly what seems to be happening is: it gives you access to parts of your brain that you normally can’t access…. All your thoughts or your memories or your interactions with everyone else come out.” But he stresses that the experiences of people undergoing cardiac arrest are lucid, not merely hallucinations. “They’re not delusional,” Parnia says of the resuscitated people he studied, and what they’re experiencing is “not dreams or hallucinations.” Although his previous studies focused on resuscitated critically ill people, Parnia believes that terminal lucidity in people who are comatose or have dementia may be the product of a similar process. He is currently participating in a study on the latter phenomenon.

A full explanation for the conscious experiences of dying people remains elusive. But research increasingly paints a picture of death as an incredibly active and complex process—and, perhaps more importantly, “a humanized one,” as Kerr describes it. As for people with dementia, Karlawish says that rather than assuming their consciousness has been irrevocably changed, “we should still pay close attention to their mind because some aspects are still there, though they may be quite damaged.”

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Surges of activity in the dying human brain could hint at fleeting conscious experiences

— An increase in a certain kind of high-frequency wave in dying brains might be associated with last-minute conscious experiences, but scientists don’t know for sure.

In a new study, researchers recorded comatose patients’ brain activity as they died.

By Stephanie Pappas

In their last minutes of life, some people’s brains generate a surge of surprisingly organized-looking electrical activity that may reflect consciousness — although scientists aren’t entirely sure.

According to new research, published Monday (May 1) in the journal PNAS (opens in new tab), this surge can sometimes occur after a person’s breathing stops but before the brain stops functioning. The activity pattern is somewhat similar to what is seen when people are awake or in dreamlike states, leading to speculation that perhaps these electrical surges reflect the otherworldly experiences reported by people who’ve had close brushes with death: A sense of looking at the body from the outside; a tunnel and white light; or a sense of reliving important memories.

However, since all the patients in the new study ultimately died, it’s impossible to know if they had such experiences.

“If you talk about the dying process, there is very little we know,” said Jimo Borjigin (opens in new tab), a neuroscientist at the University of Michigan Medical School who led the study. It’s rare for patients to have their brains continuously monitored as they die, Borjigin told Live Science. “This is maybe the first study to really show second-by-second how the brain dies.”

Near-death experiences

Some people who are brought back from the brink of death report seeing or hearing unexplained things during resuscitation or when they seem to be unconscious. The reason for these near-death experiences is unknown, and it’s not clear if they’re even specific to death.

International surveys suggest that only about half of what people call “near-death experiences” actually occur in life-threatening situations, said Daniel Kondziella (opens in new tab), a neurologist at the University of Copenhagen who was not involved in the new research. The other half occur during meditation or in scary situations that don’t endanger one’s health or impact the brain’s metabolism, Kondiziella told Live Science.

“The thing is, from the experience itself you cannot say if someone has had a cardiac arrest or syncope [a brief loss of consciousness] or near-miss traffic accident,” Kondiziella said.

Because the people who survive to report a near-death experience are inherently different from the people who die — their brains don’t permanently lose function, for one thing — it’s hard to determine whether those who actually die also have these subjective experiences.

In 2013, Borjigin and her colleagues measured electrical activity in the brains of rats (opens in new tab) that they euthanized via cardiac arrest. They found that for about 30 seconds after the heart stopped, the brain showed a surge in what are called gamma waves, which are the highest-frequency electrical oscillations in the brain. Gamma waves are correlated with conscious experience, but don’t necessarily prove that someone is conscious; they’re just one of many indicators that someone might be aware and alert.

In 2022, a separate group of doctors happened to be monitoring the brain of an 87-year-old man with an electroencephalogram (EEG), which detects electrical activity on the surface of the brain, when the man unexpectedly died. Similar to Borjigin’s rats, the man’s brain showed a surge in gamma activity in the 30 seconds before and after his heart stopped.

‘Reading’ the dying brain

In their new paper, Borjigin and her team made a deliberate effort to use EEG to capture what the brain looks like during death.

The researchers got permission to monitor dying patients in intensive care whose breathing support had been removed after treatment proved futile. The study included four patients total, all of whom were comatose after cardiac arrest.

In the 30 seconds to two minutes after their ventilators were removed, two of the four patients’ brains showed surges in gamma waves. Interestingly, this gamma activity seemed organized, in that the gamma waves in one portion of the brain were associated with predictable activity patterns in other regions.

The temporoparietal junction, a brain region where the temporal and parietal lobes meet, toward the back of the brain behind the ear, was particularly active with gamma waves. This region is known to be activated when people have out-of-body experiences or dreams, Borjigin said.

The new findings echo what was seen in the 87-year-old patient who unexpectedly died, said Raul Vicente (opens in new tab), a neuroscientist and data scientist at the University of Tartu who co-authored the 2022 study but was not involved in Borjigin’s work. “It’s very nice to see a confirmation,” he told Live Science.

“The more consistent findings we have, the more evidence it is that this likely is a mechanism happening at the time of death and if we can pinpoint this down to one location, even better,” said Ajmal Zemmar (opens in new tab), a neurosurgeon at the University of Louisville Health who also co-authored the 2022 study.

Zemmar and Vicente are optimistic that these signals could be signs of conscious experience at the moment of death. But reflecting the debate in the field, Kondziella is more skeptical.

“We know when you die a cardiac death as opposed to a brain death, that takes time,” he said. Minutes pass between the heart stopping and brain cells dying, he said. “It shouldn’t be a big surprise during those minutes, you will see aberrant electrophysiological activity in the brain.”

Some people may experience something like near-death experiences in these moments, Kondziella said, but we may never know for sure. And again, these experiences may not be unique to death — a more likely explanation for near-death experiences that encompasses both life-threatening experiences and non-life-threatening experiences, he said, may be “REM sleep intrusion into wakefulness,” a situation in which the brain blends waking and dreaming states. (REM sleep is marked by dreaming and brain activity patterns that are very similar to waking, including gamma waves and other, lower-frequency waves.)

Borjigin’s team is still collecting end-of-life data, hoping to add to the evidence that the dying brain may generate predictable gamma-wave patterns. Already, other research groups have attempted to use artificial intelligence to identify objects that people saw in their dreams (opens in new tab) based on their brain activity — similar mind-reading may be possible with unconscious and dying patients, Vicente said.

“This opens an opportunity at some point, if we gather enough data, to be able to decode what people in different coma states are thinking,” Vicente said.

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In the I.C.U., Dying Sometimes Feels Like a Choice

By By Daniela J. Lamas

My patient’s wife had just one question: Was her husband dying?

She knew that he was still on the ventilator even after all these weeks, his lungs too sick and his body too weak to breathe on his own. That he still needed a continuous dialysis machine to do the work of his kidneys. That he had yet to wake up in any meaningful way, though his brain scans showed nothing amiss. That it had been more than 50 days since he entered the hospital and we needed to talk about what would come next.

But when she stood there at the bedside, her husband looked much the same to her as he had a week ago, much the same as he might look next week if we continued to push forward. And she had to ask: Why did we need to have this conversation today? Was her husband dying?

You might think this is an easy question to answer. And yet here in the intensive care unit, it is not. Our medicines and machines extend the lives of patients who would otherwise have died. But what happens when it becomes clear that a patient is not actively dying, but not getting better either? How do doctors and family members navigate death when it is not imminent and unavoidable, but is instead a decision?

During my medical training, death happened in one of two ways. It was either a moment of crisis, doctors rushing into a room, all sound and fury and chest compressions for minutes that felt like hours. Or it was something quieter, entirely divorced from machines, family gathered for the last breaths when the lungs were failing, or the cancer had spread too far.

But there’s a third form that dying takes, when it becomes clear that the life that we can offer is not one that would be acceptable to the patient. It is a death that is made imminent only by the withdrawal of medicines and machines — a death that we plan for. It is a strange thing to plan a death, but I have come to understand that this is part of our work in the I.C.U.

A few months ago, I took care of a cancer patient in her 70s who had been intubated because of a flare-up of an underlying lung disease. In the moments before the anesthesiologists put her to sleep and placed the breathing tube down her throat, she had given her son instructions: Give her a chance to get better, but if that failed, she did not want a tracheostomy tube for a longer-term connection to the ventilator or months at a rehabilitation hospital. Her cancer was progressing, and that was not the way she wanted to spend the last year of her life.

I told her family that we would continue our intensive interventions for two weeks, a “time-limited trial of critical care,” as we often call it. If my patient was not breathing on her own at that point, then she never would never be — not without a trach and protracted rehab, a best-case scenario that she would find unacceptable. A week passed. She improved a bit and her family let themselves hope, only to be devastated days later when she worsened again.

Then, the day before the time-limited trial was to end, my patient’s son and daughter took me aside. They could not bring themselves to leave that night and return the next morning to hear the words that now seemed inevitable. If their mother was not going to improve, they wanted to take her off the machines that evening. The next day was her grandson’s birthday. She would not have wanted the little boy’s celebration to be forever intertwined with the sadness of her death. Perhaps they could wait until the day after the birthday, but that might only prolong their mother’s suffering.

There is something uncomfortable about these conversations, where it feels as though we are asking family members to plan the end of a life. It begins with a moment in the family meeting, when we have made the decision to “transition to comfort,” and family members ask me what comes next. What they are asking, really, is how their loved one will die.

As gently as I can, I tell them that when they are ready — as anyone really can be for any of this — we will stop the medications and the tubes that are prolonging life. I tell them that the bedside nurse will give other meds, often morphine or a similar drug, to make sure that their loved one is not in pain. Sometimes they ask if this medication will hasten death, and I explain that it can, but that our primary goal is always to relieve discomfort.

We even have a term for this balance, the “principle of double effect” — as doctors, we accept the risk of a negative consequence like hastening death, so long as our intended outcome is to help the patient by alleviating symptoms. The pain-relieving meds that we administer do not themselves cause death; instead they ensure that our patients are as comfortable as they can be while dying from their underlying disease.

Some family members ask us to stop everything all at once. Others ask for a longer process, to stop one medicine and then another. Someone recently asked the nurse to let every medication run out and not to replace the IV bags. Some ask us to remove the breathing tube, others do not. I am often surprised to what extent people have ideas about what feels right to them, about how the unimaginable should play out. Sometimes there is music. Jerry Garcia. Beethoven. For others, this is all one decision too many, and they sit in silence.

A resident doctor in training came to me recently after one such family meeting, worried that by telling a family that their loved one was dying, he had made it true. If we define dying solely by physiology, by a falling blood pressure or oxygen level, then perhaps that concern is valid. But if we broaden our definition, if we think of dying in the intensive care unit as something that begins when an acceptable outcome is no longer possible, then we are acknowledging the inevitable.

Which is what I told my patient’s wife that day outside his room. We had given her husband every chance to rebound, to show us that he could make it through, but the insults his body faced were too great. We could press on, but to what end? He would never make it home, never be able to do the things that made his life worth living.

She was right, the timing of this conversation was, in a way, arbitrary. Had I been dealing with a patient in extremis, I might not have stopped her outside the room that day. But once we recognized the reality of her husband’s medical condition, what choice was there?

That night, my patient’s wife made the decision to take him off the ventilator. The nurses titrated the pain medications that ran through his veins as she held vigil at his bedside. And after weeks of critical care limbo, the answer to her question was finally clear. Her husband was dying.

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What to expect when someone is in the last few days of life

The dying process is unique to each person, however there are a few common changes that happen to almost everyone when they are in the last days of life. Some of these might look distressing, but most of the time the person is not in any pain, and they are just a normal part of dying.

Loss of appetite

When someone is at the end of life they will typically have less appetite, as their need for food and drink reduces. If they stop drinking and their mouth looks dry, this does not necessarily mean they are dehydrated.

It might be too much effort to eat and drink. If this is the case you can offer sips or small bites, provided they are conscious and can still swallow. You can also help someone with a dry mouth by:

  • offering a drink through a straw (or from a teaspoon)
  • moistening the mouth with a damp sponge – special kinds of sponge are available for this purpose (the person may bite on this at first, but keep holding it, as they will let go)
  • placing ice chips in their mouth
  • applying lip balm

Changes to breathing

As a person becomes less active towards the end of their life, they need less oxygen. Breathing may become shallower and there may be long pauses between breaths. They might yawn frequently, as this is a natural response to draw more oxygen into the body.

Their breathing can make a noise because they are not able to properly re-absorb fluids in their chest or throat, which can cause a rattling sound. This may be upsetting to hear, but it doesn’t mean they are in distress or need oxygen. It can be a bit like snoring – it affects those who hear it more than the person who is making the sound.

If their breathing is very loud, it may be helpful to change their position so they are on their side, as long as this doesn’t disturb them. You can ask to be shown the best way to move them – ask about sliding sheets.

The doctor or nurse may also suggest medication to reduce the fluids in their chest or throat. This is not always needed, and it does not always make a difference.

Anxiety can cause their breath rate to increase a little. Breathlessness can be frightening but simply sitting with them so they know you are there can help.

Needing more sleep

They are likely to spend more time sleeping, and will often be drowsy even when they are awake.  They may also drift in and out of consciousness. Some people become completely unconscious for periods of time before they die – this could be for a short period or as long as several days.

They may seem less interested in what is going on around them, and have less energy to take part, but this does not mean they can’t hear you.

You can carry on speaking quietly to them. You could also try letting them know you are there in other ways, for instance by holding their hand, reading to them, or playing their favourite music.

Restlessness

Some people can become restless in the last few days of life. They will usually become calm again before they die.

They may appear confused and not recognise familiar faces, and even see or hear people or things that are not actually there – for instance, they may see pets or people who have died.

While this can be upsetting it is not a sign that they feel differently about you. This can be caused by medicines or changes in the chemical balance of the brain, or as a result of drifting in and out of sleep so they are unable to clearly distinguish between what is real and what is not.

If they are agitated, often just sitting with the person can help to calm them down. You can also help by:

  • speaking clearly and audibly
  • reminding them who you are (and being prepared to do so repeatedly)
  • keeping their surroundings calm with few changes in noise level
  • trying not to correct them if they say something wrong, or insist on them getting things right, as this may be upsetting for you and for them

Agitation could also be a sign of constipation or difficulty passing urine. Ask the medical team if you have any concerns so they can rule out any underlying causes and if necessary prescribe medicine.

Changes to skin

Changes to the metabolism of the dying person can cause their breath, skin and body fluids to have a distinctive smell similar to that of nail polish remover. If a person is dying from bowel or stomach cancer, this smell might be quite strong.

The person’s hands, feet, ears and nose may feel cold. Their skin may also become mottled and blue, or patchy and uneven in colour. Occasionally, a person’s hands or other body parts may swell a little.

This happens due to reduced circulation and is normal. As the body’s functions slow down, blood may coagulate or pool, particularly at the base of the spine, which can cause patches that look like dark purple bruising. This is not usually painful or uncomfortable. Gentle massage can help, ask the nurses to show you how to do this.

Losing control of bladder or bowels

When someone is in the last few days of life the muscles in their bladder and bowels relax, which can cause them to lose control of their movements. This may be distressing to see, and they might feel embarrassed.

You can ask a nurse to show you how to keep their bed clean and comfortable. You can also ask for incontinence pads or a catheter – a long thin tube that can be put into a person’s bladder to drain urine.

It is also common to have fewer bowel movements if they are eating less, and urine may get darker as they drink less.

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First ever recording of moment someone dies reveals what our last thoughts may be

Does your life really flash before your eyes when you die?

By

What happens when we die?

Scientists may finally be in a position to answer that question after they recorded the brain waves of a patient as her life ended.

Crucially, they didn’t set out to capture this data – instead it ocurred by happenstance.

Researchers in the United States were running an electroencephalogram (EEG) on an 87-year-old man who suffered from epilepsy.

An EEG measures the electrical activity of your brain and, in this case, was being used to detect the onset of seizures.

However, during the treatment, the patient had a heart attack and died.

As such, the scientists were able to record 15 minutes of brain activity around his death. And what they found was extremely interesting.

Focusing on the 30 seconds either side of the moment the patient’s heart stopped beating, they detected an increase in brain waves known as gamma oscillations.

These waves are also involved in activities such as meditation, memory retrieval and dreaming.

We can’t say for sure whether dying people really do see their life flash before their eyes, but this particualar study seems to support the idea.

And the scientists say the brain is capable of co-ordinated activity for a short period even after the blood stops flowing through it.

‘Through generating oscillations involved in memory retrieval, the brain may be playing a last recall of important life events just before we die, similar to the ones reported in near-death experiences,’ said Dr. Ajmal Zemmar, lead author of the study, which was published in the journal Frontiers in Ageing Neuroscience.

‘These findings challenge our understanding of when exactly life ends and generate important subsequent questions, such as those related to the timing of organ donation.’

In the study, the researchers point out that similar changes in brainwaves have been detected in rats at the time of death.

However, this is the first time it’s been seen in a human.

Dr. Zemmar and his team say that further research needs to be done before drawing any definite conclusions.

This study arises from data relating to just a single case study. And the patient’s brain had already been injured and was showing unusual activity related to epilepsy.

It’s not clear if the same results would occur in a different person’s brain at the time of death.

‘Something we may learn from this research is: although our loved ones have their eyes closed and are ready to leave us to rest, their brains may be replaying some of the nicest moments they experienced in their lives,’ Dr. Zemmar said.

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What “Shared Death Experiences” Are

& Why We Need To Discuss Them

By William Peters, MFT

As an end-of-life therapist and researcher, I have long known that American culture has an uneasy relationship with death. We have been taught to “fear” death and dying. Fitness regimens, diets, and cosmetic procedures tout themselves as being able to “turn back the clock.” Medicine is even more uncomfortable with life’s end: Beating death is often presented as the ultimate goal. Aggressive measures to prolong life are viewed as a testament to our love for another person.

This relentless effort to fend off death is confounding when one considers that opinion polls consistently find that the majority of Americans believe in a benevolent afterlife. It would appear that the public interest in the mysteries that surround life’s end is far more extensive than our institutions would suggest.

Why we don’t feel comfortable discussing shared death experiences.

Much of my work centers on the transition from life to death, specifically “shared death experiences” where the living report a connection with the deceased around the time of their death. I’ve overwhelmingly found that this connection involves a clear sense that their loved one has moved on to a better place. In more than 50% of the cases that I have studied, experiencers even report accompanying their friend or loved one part way on their journey out of earthly life.

Knowledge of this transition space is an open secret in palliative and hospice care. We know that many terminally ill patients also report being aware of or seeing deceased family members, friends, and even pets, in the room with them, coming to help usher them out of this world. Some shared death experiencers also see or sense these figures as well.

Yet, again and again, shared death experiencers tell me that they feel uneasy discussing this subject with their health care and spiritual care providers. Their concern is valid, as one study found that 80% of patients who had sensed the presence of a deceased and shared it with their therapist felt dissatisfied with their counselors’ responses. They either did not feel understood, or they felt dismissed.

It wasn’t always this way.

One of the earliest written works on end-of-life care is the medieval text Ars Moriendi or “Art of Dying,” which was utilized in Catholic monasteries in Europe. Not only does it contain information on prayers, music, and pain remedies, as well as guidance on managing mental and emotional distress among the dying, but it is surprisingly ecumenical, drawing guidance from Catholic, Celtic, Jewish, and even Islamic traditions. Its underlying message is that dying is a spiritual experience and that it is possible to die well and be comforted. However, in our own era, there has been a strong reluctance to discuss what makes a good death or to openly explore what happens to us when we die.

In our own era, there has been a strong reluctance to discuss what makes a good death.

Speaking of her own shared death experience, Stephanie, a woman in Washington, D.C., whose husband died of aggressive cancer, recalled traveling with him into an incredibly bright, white light. She said, “There was no pain, no hurt. It was peaceful,” adding, “It felt as if I were going back to something I already knew.” But her own clergy shut down any conversation, and “that deflated me terribly,” she said. Finally, an oncologist told her that he’d had a similar experience. He told her this, however, after closing the office door and stating he would never share his experience with anyone else.

I believe that these hushed discussions could be the very things we need to help both the dying and the bereaved. Listening to and examining stories of individuals who have had shared death experiences can offer us another framework in which to process and accept death.

Consider the story of Carl, a California man whose father died of heart failure in Massachusetts. He experienced an overpowering sensation of being next to his father, saying “I could feel it in my bones and my cells that my dad was there with me.” While the experience did not end his grief, it changed his perspective. “I miss my dad,” he told me, adding, “and I wish I could call him up and be with him and spend time with him. I grieved and was sad, but it doesn’t feel like a tragedy. It feels like he is in the place he needs to be.”

Indeed, of the nearly 1,000 cases I have studied, 87% of the people interviewed report that their experience has convinced them that there is a benevolent afterlife. Nearly 70% said their shared death experience has positively affected their grief, and more than 50% said that it has removed their own fears around death and dying.

The takeaway.

In the last two years, the pandemic has resulted in a wave of death among people we know and love. Perhaps now, together, we can start a new conversation—one that is willing to include the voices of shared death experiencers. With their heartwarming stories, we may be able to transform our relationship with death from one of resistance and fear to that of acceptance, ease, and wonder of this great mystery that we will all one day embark on.

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