Category: Talking about death

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The new science of death

— ‘There’s something happening in the brain that makes no sense’

New research into the dying brain suggests the line between life and death may be less distinct than previously thought

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Patient One was 24 years old and pregnant with her third child when she was taken off life support. It was 2014. A couple of years earlier, she had been diagnosed with a disorder that caused an irregular heartbeat, and during her two previous pregnancies she had suffered seizures and faintings. Four weeks into her third pregnancy, she collapsed on the floor of her home. Her mother, who was with her, called 911. By the time an ambulance arrived, Patient One had been unconscious for more than 10 minutes. Paramedics found that her heart had stopped.

After being driven to a hospital where she couldn’t be treated, Patient One was taken to the emergency department at the University of Michigan. There, medical staff had to shock her chest three times with a defibrillator before they could restart her heart. She was placed on an external ventilator and pacemaker, and transferred to the neurointensive care unit, where doctors monitored her brain activity. She was unresponsive to external stimuli, and had a massive swelling in her brain. After she lay in a deep coma for three days, her family decided it was best to take her off life support. It was at that point – after her oxygen was turned off and nurses pulled the breathing tube from her throat – that Patient One became one of the most intriguing scientific subjects in recent history.

For several years, Jimo Borjigin, a professor of neurology at the University of Michigan, had been troubled by the question of what happens to us when we die. She had read about the near-death experiences of certain cardiac-arrest survivors who had undergone extraordinary psychic journeys before being resuscitated. Sometimes, these people reported travelling outside of their bodies towards overwhelming sources of light where they were greeted by dead relatives. Others spoke of coming to a new understanding of their lives, or encountering beings of profound goodness. Borjigin didn’t believe the content of those stories was true – she didn’t think the souls of dying people actually travelled to an afterworld – but she suspected something very real was happening in those patients’ brains. In her own laboratory, she had discovered that rats undergo a dramatic storm of many neurotransmitters, including serotonin and dopamine, after their hearts stop and their brains lose oxygen. She wondered if humans’ near-death experiences might spring from a similar phenomenon, and if it was occurring even in people who couldn’t be revived.

Dying seemed like such an important area of research – we all do it, after all – that Borjigin assumed other scientists had already developed a thorough understanding of what happens to the brain in the process of death. But when she looked at the scientific literature, she found little enlightenment. “To die is such an essential part of life,” she told me recently. “But we knew almost nothing about the dying brain.” So she decided to go back and figure out what had happened inside the brains of people who died at the University of Michigan neurointensive care unit. Among them was Patient One.

At the time Borjigin began her research into Patient One, the scientific understanding of death had reached an impasse. Since the 1960s, advances in resuscitation had helped to revive thousands of people who might otherwise have died. About 10% or 20% of those people brought with them stories of near-death experiences in which they felt their souls or selves departing from their bodies. A handful of those patients even claimed to witness, from above, doctors’ attempts to resuscitate them. According to several international surveys and studies, one in 10 people claims to have had a near-death experience involving cardiac arrest, or a similar experience in circumstances where they may have come close to death. That’s roughly 800 million souls worldwide who may have dipped a toe in the afterlife.

As remarkable as these near-death experiences sounded, they were consistent enough that some scientists began to believe there was truth to them: maybe people really did have minds or souls that existed separately from their living bodies. In the 1970s, a small network of cardiologists, psychiatrists, medical sociologists and social psychologists in North America and Europe began investigating whether near-death experiences proved that dying is not the end of being, and that consciousness can exist independently of the brain. The field of near-death studies was born.

Over the next 30 years, researchers collected thousands of case reports of people who had had near-death experiences. Meanwhile, new technologies and techniques were helping doctors revive more and more people who, in earlier periods of history, would have almost certainly been permanently deceased. “We are now at the point where we have both the tools and the means to scientifically answer the age-old question: What happens when we die?” wrote Sam Parnia, an accomplished resuscitation specialist and one of the world’s leading experts on near-death experiences, in 2006. Parnia himself was devising an international study to test whether patients could have conscious awareness even after they were found clinically dead.

But by 2015, experiments such as Parnia’s had yielded ambiguous results, and the field of near-death studies was not much closer to understanding death than it had been when it was founded four decades earlier. That’s when Borjigin, together with several colleagues, took the first close look at the record of electrical activity in the brain of Patient One after she was taken off life support. What they discovered – in results reported for the first time last year – was almost entirely unexpected, and has the potential to rewrite our understanding of death.

“I believe what we found is only the tip of a vast iceberg,” Borjigin told me. “What’s still beneath the surface is a full account of how dying actually takes place. Because there’s something happening in there, in the brain, that makes no sense.”

For all that science has learned about the workings of life, death remains among the most intractable of mysteries. “At times I have been tempted to believe that the creator has eternally intended this department of nature to remain baffling, to prompt our curiosities and hopes and suspicions all in equal measure,” the philosopher William James wrote in 1909.

The first time that the question Borjigin began asking in 2015 was posed – about what happens to the brain during death – was a quarter of a millennium earlier. Around 1740, a French military physician reviewed the case of a famous apothecary who, after a “malign fever” and several blood-lettings, fell unconscious and thought he had travelled to the Kingdom of the Blessed. The physician speculated that the apothecary’s experience had been caused by a surge of blood to the brain. But between that early report and the mid-20th century, scientific interest in near-death experiences remained sporadic.

In 1892, the Swiss climber and geologist Albert Heim collected the first systematic accounts of near-death experiences from 30 fellow climbers who had suffered near-fatal falls. In many cases, the climbers underwent a sudden review of their entire past, heard beautiful music, and “fell in a superbly blue heaven containing roseate cloudlets”, Heim wrote. “Then consciousness was painlessly extinguished, usually at the moment of impact.” There were a few more attempts to do research in the early 20th century, but little progress was made in understanding near-death experiences scientifically. Then, in 1975, an American medical student named Raymond Moody published a book called Life After Life.

Sunbeams behind clouds in vivid sunset sky reflecting in ocean water

In his book, Moody distilled the reports of 150 people who had had intense, life-altering experiences in the moments surrounding a cardiac arrest. Although the reports varied, he found that they often shared one or more common features or themes. The narrative arc of the most detailed of those reports – departing the body and travelling through a long tunnel, having an out-of-body experience, encountering spirits and a being of light, one’s whole life flashing before one’s eyes, and returning to the body from some outer limit – became so canonical that the art critic Robert Hughes could refer to it years later as “the familiar kitsch of near-death experience”. Moody’s book became an international bestseller.

In 1976, the New York Times reported on the burgeoning scientific interest in “life after death” and the “emerging field of thanatology”. The following year, Moody and several fellow thanatologists founded an organisation that became the International Association for Near-Death Studies. In 1981, they printed the inaugural issue of Vital Signs, a magazine for the general reader that was largely devoted to stories of near-death experiences. The following year they began producing the field’s first peer-reviewed journal, which became the Journal of Near-Death Studies. The field was growing, and taking on the trappings of scientific respectability. Reviewing its rise in 1988, the British Journal of Psychiatry captured the field’s animating spirit: “A grand hope has been expressed that, through NDE research, new insights can be gained into the ageless mystery of human mortality and its ultimate significance, and that, for the first time, empirical perspectives on the nature of death may be achieved.”

But near-death studies was already splitting into several schools of belief, whose tensions continue to this day. One influential camp was made up of spiritualists, some of them evangelical Christians, who were convinced that near-death experiences were genuine sojourns in the land of the dead and divine. As researchers, the spiritualists’ aim was to collect as many reports of near-death experience as possible, and to proselytise society about the reality of life after death. Moody was their most important spokesman; he eventually claimed to have had multiple past lives and built a “psychomanteum” in rural Alabama where people could attempt to summon the spirits of the dead by gazing into a dimly lit mirror.

The second, and largest, faction of near-death researchers were the parapsychologists, those interested in phenomena that seemed to undermine the scientific orthodoxy that the mind could not exist independently of the brain. These researchers, who were by and large trained scientists following well established research methods, tended to believe that near-death experiences offered evidence that consciousness could persist after the death of the individual. Many of them were physicians and psychiatrists who had been deeply affected after hearing the near-death stories of patients they had treated in the ICU. Their aim was to find ways to test their theories of consciousness empirically, and to turn near-death studies into a legitimate scientific endeavour.

Finally, there emerged the smallest contingent of near-death researchers, who could be labelled the physicalists. These were scientists, many of whom studied the brain, who were committed to a strictly biological account of near-death experiences. Like dreams, the physicalists argued, near-death experiences might reveal psychological truths, but they did so through hallucinatory fictions that emerged from the workings of the body and the brain. (Indeed, many of the states reported by near-death experiencers can apparently be achieved by taking a hero’s dose of ketamine.) Their basic premise was: no functioning brain means no consciousness, and certainly no life after death. Their task, which Borjigin took up in 2015, was to discover what was happening during near-death experiences on a fundamentally physical level.

Slowly, the spiritualists left the field of research for the loftier domains of Christian talk radio, and the parapsychologists and physicalists started bringing near-death studies closer to the scientific mainstream. Between 1975, when Moody published Life After Life, and 1984, only 17 articles in the PubMed database of scientific publications mentioned near-death experiences. In the following decade, there were 62. In the most recent 10-year span, there were 221. Those articles have appeared everywhere from the Canadian Urological Association Journal to the esteemed pages of The Lancet.

Today, there is a widespread sense throughout the community of near-death researchers that we are on the verge of great discoveries. Charlotte Martial, a neuroscientist at the University of Liège in Belgium who has done some of the best physicalist work on near-death experiences, hopes we will soon develop a new understanding of the relationship between the internal experience of consciousness and its outward manifestations, for example in coma patients. “We really are in a crucial moment where we have to disentangle consciousness from responsiveness, and maybe question every state that we consider unconscious,” she told me. Parnia, the resuscitation specialist, who studies the physical processes of dying but is also sympathetic to a parapsychological theory of consciousness, has a radically different take on what we are poised to find out. “I think in 50 or 100 years time we will have discovered the entity that is consciousness,” he told me. “It will be taken for granted that it wasn’t produced by the brain, and it doesn’t die when you die.”

If the field of near-death studies is at the threshold of new discoveries about consciousness and death, it is in large part because of a revolution in our ability to resuscitate people who have suffered cardiac arrest. Lance Becker has been a leader in resuscitation science for more than 30 years. As a young doctor attempting to revive people through CPR in the mid-1980s, senior physicians would often step in to declare patients dead. “At a certain point, they would just say, ‘OK, that’s enough. Let’s stop. This is unsuccessful. Time of death: 1.37pm,’” he recalled recently. “And that would be the last thing. And one of the things running through my head as a young doctor was, ‘Well, what really happened at 1.37?’”

In a medical setting, “clinical death” is said to occur at the moment the heart stops pumping blood, and the pulse stops. This is widely known as cardiac arrest. (It is different from a heart attack, in which there is a blockage in a heart that’s still pumping.) Loss of oxygen to the brain and other organs generally follows within seconds or minutes, although the complete cessation of activity in the heart and brain – which is often called “flatlining” or, in the case of the latter, “brain death” – may not occur for many minutes or even hours.

For almost all people at all times in history, cardiac arrest was basically the end of the line. That began to change in 1960, when the combination of mouth-to-mouth ventilation, chest compressions and external defibrillation known as cardiopulmonary resuscitation, or CPR, was formalised. Shortly thereafter, a massive campaign was launched to educate clinicians and the public on CPR’s basic techniques, and soon people were being revived in previously unthinkable, if still modest, numbers.

As more and more people were resuscitated, scientists learned that, even in its acute final stages, death is not a point, but a process. After cardiac arrest, blood and oxygen stop circulating through the body, cells begin to break down, and normal electrical activity in the brain gets disrupted. But the organs don’t fail irreversibly right away, and the brain doesn’t necessarily cease functioning altogether. There is often still the possibility of a return to life. In some cases, cell death can be stopped or significantly slowed, the heart can be restarted, and brain function can be restored. In other words, the process of death can be reversed.

It is no longer unheard of for people to be revived even six hours after being declared clinically dead. In 2011, Japanese doctors reported the case of a young woman who was found in a forest one morning after an overdose stopped her heart the previous night; using advanced technology to circulate blood and oxygen through her body, the doctors were able to revive her more than six hours later, and she was able to walk out of the hospital after three weeks of care. In 2019, a British woman named Audrey Schoeman who was caught in a snowstorm spent six hours in cardiac arrest before doctors brought her back to life with no evident brain damage.

“I don’t think there’s ever been a more exciting time for the field,” Becker told me. “We’re discovering new drugs, we’re discovering new devices, and we’re discovering new things about the brain.”

The brain – that’s the tricky part. In January 2021, as the Covid-19 pandemic was surging toward what would become its deadliest week on record, Netflix released a documentary series called Surviving Death. In the first episode, some of near-death studies’ most prominent parapsychologists presented the core of their arguments for why they believe near-death experiences show that consciousness exists independently of the brain. “When the heart stops, within 20 seconds or so, you get flatlining, which means no brain activity,” Bruce Greyson, an emeritus professor of psychiatry at the University of Virginia and one of the founding members of the International Association for Near-Death Studies, says in the documentary. “And yet,” he goes on to claim, “people have near-death experiences when they’ve been (quote) ‘flatlined’ for longer than that.”

That is a key tenet of the parapsychologists’ arguments: if there is consciousness without brain activity, then consciousness must dwell somewhere beyond the brain. Some of the parapsychologists speculate that it is a “non-local” force that pervades the universe, like electromagnetism. This force is received by the brain, but is not generated by it, the way a television receives a broadcast.

In order for this argument to hold, something else has to be true: near-death experiences have to happen during death, after the brain shuts down. To prove this, parapsychologists point to a number of rare but astounding cases known as “veridical” near-death experiences, in which patients seem to report details from the operating room that they might have known only if they had conscious awareness during the time that they were clinically dead. Dozens of such reports exist. One of the most famous is about a woman who apparently travelled so far outside her body that she was able to spot a shoe on a window ledge in another part of the hospital where she went into cardiac arrest; the shoe was later reportedly found by a nurse.

an antique illustration of an 'out of body experience'

At the very least, Parnia and his colleagues have written, such phenomena are “inexplicable through current neuroscientific models”. Unfortunately for the parapsychologists, however, none of the reports of post-death awareness holds up to strict scientific scrutiny. “There are many claims of this kind, but in my long decades of research into out-of-body and near-death experiences I never met any convincing evidence that this is true,” Sue Blackmore, a well-known researcher into parapsychology who had her own near-death experience as a young woman in 1970, has written.

The case of the shoe, Blackmore pointed out, relied solely on the report of the nurse who claimed to have found it. That’s far from the standard of proof the scientific community would require to accept a result as radical as that consciousness can travel beyond the body and exist after death. In other cases, there’s not enough evidence to prove that the experiences reported by cardiac arrest survivors happened when their brains were shut down, as opposed to in the period before or after they supposedly “flatlined”. “So far, there is no sufficiently rigorous, convincing empirical evidence that people can observe their surroundings during a near-death experience,” Charlotte Martial, the University of Liège neuroscientist, told me.

The parapsychologists tend to push back by arguing that even if each of the cases of veridical near-death experiences leaves room for scientific doubt, surely the accumulation of dozens of these reports must count for something. But that argument can be turned on its head: if there are so many genuine instances of consciousness surviving death, then why should it have so far proven impossible to catch one empirically?

Perhaps the story to be written about near-death experiences is not that they prove consciousness is radically different from what we thought it was. Instead, it is that the process of dying is far stranger than scientists ever suspected. The spiritualists and parapsychologists are right to insist that something deeply weird is happening to people when they die, but they are wrong to assume it is happening in the next life rather than this one. At least, that is the implication of what Jimo Borjigin found when she investigated the case of Patient One.

In the moments after Patient One was taken off oxygen, there was a surge of activity in her dying brain. Areas that had been nearly silent while she was on life support suddenly thrummed with high-frequency electrical signals called gamma waves. In particular, the parts of the brain that scientists consider a “hot zone” for consciousness became dramatically alive. In one section, the signals remained detectable for more than six minutes. In another, they were 11 to 12 times higher than they had been before Patient One’s ventilator was removed.

“As she died, Patient One’s brain was functioning in a kind of hyperdrive,” Borjigin told me. For about two minutes after her oxygen was cut off, there was an intense synchronisation of her brain waves, a state associated with many cognitive functions, including heightened attention and memory. The synchronisation dampened for about 18 seconds, then intensified again for more than four minutes. It faded for a minute, then came back for a third time.

In those same periods of dying, different parts of Patient One’s brain were suddenly in close communication with each other. The most intense connections started immediately after her oxygen stopped, and lasted for nearly four minutes. There was another burst of connectivity more than five minutes and 20 seconds after she was taken off life support. In particular, areas of her brain associated with processing conscious experience – areas that are active when we move through the waking world, and when we have vivid dreams – were communicating with those involved in memory formation. So were parts of the brain associated with empathy. Even as she slipped irrevocably deeper into death, something that looked astonishingly like life was taking place over several minutes in Patient One’s brain.

The shadows of anonymous people are seen on a wall

Those glimmers and flashes of something like life contradict the expectations of almost everyone working in the field of resuscitation science and near-death studies. The predominant belief – expressed by Greyson, the psychiatrist and co-founder of the International Association of Near Death Studies, in the Netflix series Surviving Death – was that as soon as oxygen stops going to the brain, neurological activity falls precipitously. Although a few earlier instances of brain waves had been reported in dying human brains, nothing as detailed and complex as what occurred in Patient One had ever been detected.

Given the levels of activity and connectivity in particular regions of her dying brain, Borjigin believes it’s likely that Patient One had a profound near-death experience with many of its major features: out-of-body sensations, visions of light, feelings of joy or serenity, and moral re-evaluations of one’s life. Of course, Patient One did not recover, so no one can prove that the extraordinary happenings in her dying brain had experiential counterparts. Greyson and one of the other grandees of near-death studies, a Dutch cardiologist named Pim van Lommel, have asserted that Patient One’s brain activity can shed no light on near-death experiences because her heart hadn’t fully flatlined, but that is a self-defeating argument: there is no rigorous empirical evidence that near-death experiences occur in people whose hearts have completely stopped.

At the very least, Patient One’s brain activity – and the activity in the dying brain of another patient Borjigin studied, a 77-year-old woman known as Patient Three – seems to close the door on the argument that the brain always and nearly immediately ceases to function in a coherent manner in the moments after clinical death. “The brain, contrary to everybody’s belief, is actually super active during cardiac arrest,” Borjigin said. Death may be far more alive than we ever thought possible.

Borjigin believes that understanding the dying brain is one of the “holy grails” of neuroscience. “The brain is so resilient, the heart is so resilient, that it takes years of abuse to kill them,” she pointed out. “Why then, without oxygen, can a perfectly healthy person die within 30 minutes, irreversibly?” Although most people would take that result for granted, Borjigin thinks that, on a physical level, it actually makes little sense.

Borjigin hopes that understanding the neurophysiology of death can help us to reverse it. She already has brain activity data from dozens of deceased patients that she is waiting to analyse. But because of the paranormal stigma associated with near-death studies, she says, few research agencies want to grant her funding. “Consciousness is almost a dirty word amongst funders,” she added. “Hardcore scientists think research into it should belong to maybe theology, philosophy, but not in hardcore science. Other people ask, ‘What’s the use? The patients are gonna die anyway, so why study that process? There’s nothing you can do about it.’”

Evidence is already emerging that even total brain death may someday be reversible. In 2019, scientists at Yale University harvested the brains of pigs that had been decapitated in a commercial slaughterhouse four hours earlier. Then they perfused the brains for six hours with a special cocktail of drugs and synthetic blood. Astoundingly, some of the cells in the brains began to show metabolic activity again, and some of the synapses even began firing. The pigs’ brain scans didn’t show the widespread electrical activity that we typically associate with sentience or consciousness. But the fact that there was any activity at all suggests the frontiers of life may one day extend much, much farther into the realms of death than most scientists currently imagine.

Other serious avenues of research into near-death experience are ongoing. Martial and her colleagues at the University of Liège are working on many issues relating to near-death experiences. One is whether people with a history of trauma, or with more creative minds, tend to have such experiences at higher rates than the general population. Another is on the evolutionary biology of near-death experiences. Why, evolutionarily speaking, should we have such experiences at all? Martial and her colleagues speculate that it may be a form of the phenomenon known as thanatosis, in which creatures throughout the animal kingdom feign death to escape mortal dangers. Other researchers have proposed that the surge of electrical activity in the moments after cardiac arrest is just the final seizure of a dying brain, or have hypothesised that it’s a last-ditch attempt by the brain to restart itself, like jump-starting the engine on a car.

Meanwhile, in parts of the culture where enthusiasm is reserved not for scientific discovery in this world, but for absolution or benediction in the next, the spiritualists, along with sundry other kooks and grifters, are busily peddling their tales of the afterlife. Forget the proverbial tunnel of light: in America in particular, a pipeline of money has been discovered from death’s door, through Christian media, to the New York Times bestseller list and thence to the fawning, gullible armchairs of the nation’s daytime talk shows. First stop, paradise; next stop, Dr Oz.

But there is something that binds many of these people – the physicalists, the parapsychologists, the spiritualists – together. It is the hope that by transcending the current limits of science and of our bodies, we will achieve not a deeper understanding of death, but a longer and more profound experience of life. That, perhaps, is the real attraction of the near-death experience: it shows us what is possible not in the next world, but in this one.

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I understand why people are wary about assisted dying

— But it gave my mother a dignified end

Protesters gather in London to call for a change in the law to support assisted dying.

The Dutch legalisation spared her further misery. We don’t take euthanasia lightly; we’re just grateful to have the option

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My mother, Jannèt, was 90 years old when she ended her life by means of euthanasia. For years she had been suffering from numerous serious and painful conditions that made her life miserable. She always worried about her health and was terrified of what the future undeniably held in store for her: more pain, more dependence on others, more suffering, more desperation.

On 20 June 2022 at 2pm she was visited by a doctor and a nurse. They had a last conversation with her, during which the doctor asked her if euthanasia was still what she wanted. My mother said yes. She had already decided that she would take the drink herself instead of being injected. She didn’t want to mentally burden the doctor more than necessary.

I was impressed by my mother’s courage in the face of death. She was completely calm, almost cheerful. Before the procedure started, she spoke briefly to us, her three daughters. She told us how it was important to take care of the Earth wisely, to recycle as much as possible and to look after one another. She then drank the small cup in one gulp. She fell asleep very quickly and 15 minutes later the doctor told us her heart had stopped beating. A long and tormented life had come to an end.

The country in which I live, the Netherlands, was the first in the world to legalise euthanasia in specific cases. That was in 2001. Assisted dying has become generally accepted in our country. We talk about it openly and we consider the possibility when situations call for it. We are grateful that this option exists, because it prevents so much pointless suffering. But we never talk about it lightly. Assisted dying has always remained something huge, something you don’t resort to lightheartedly.

Renate van der Zee’s mother Jannèt
‘I was impressed by my mother’s courage in the face of death.’ Renate van der Zee’s mother Jannèt

As a matter of fact, you can’t. In the Netherlands it will always remain a criminal offence to end a life. Exceptions are made only when a whole range of requirements are met. First of all, the patient must ask for it themselves and must therefore be mentally capable of asking for it. In addition, there are all kinds of due care requirements. For example, the doctor must be convinced that the request for assisted dying is voluntary and that the patient has carefully thought it through. The doctor must also be convinced that the patient’s suffering is hopeless and unbearable. That they can no longer heal, that it is not possible to alleviate their suffering and that there is no reasonable other solution. At least one other independent doctor must be consulted. That independent doctor will discuss the situation with the patient and form his or her own opinion about the situation.

Assisted dying is allowed only if a person is suffering owing to a medical cause, not if someone is simply tired of life or feels that their life is complete. My mother didn’t feel that her life was complete. There were still things that made her happy. She loved flowers and plants; she loved politics; she followed the news. But because of her deafness, incontinence and many other conditions she became socially isolated. Visits from friends became too much for her, and at a certain point even phone calls became impossible.

Walking became very difficult, and she grew afraid to go outside. She always loved to wander through a neighbourhood park, especially in springtime, when the bluebells and lilies of the valley bloomed abundantly. But she was no longer able to go there, not even in a wheelchair. She always enjoyed reading and watching nature programmes, but those things too became increasingly difficult. Her numerous ailments and her lack of mental resilience to deal with them made a normal daily existence impossible. And there was no prospect of improvement.

My mother’s euthanasia was a long process. Five years before her death, she told her GP that assisted dying was what she wanted if her life became unbearable. Over the years, my older sister discussed this wish with her during long conversations. She also took charge of all the conversations that were necessary before permission was finally given.

My mother wanted to celebrate her 90th birthday before she took leave of life. Her last birthday fell on Easter, which she regarded as meaningful. But what kind of birthday gift can you give to someone who will soon be gone? My older sister came up with the idea of making a book in which all her loved ones wrote down what she meant to them, or reminisced. She was very happy with that.

We sat close to her when she died. My younger sister took my mother’s hand and she held it tightly. The older sibling said in a soft voice, “You can close your eyes now, Mum.” That’s what my mother did. I sat there and tried not to cry. It’s not easy to witness your mother drinking a deadly potion and dying after 15 minutes.

The next day was the first day of summer. The sun was shining, the weather was beautiful. I woke up with the pain that my mother was gone. But also with a feeling of relief and deep gratitude that, after such an incredibly difficult life, she had been granted a painless and dignified death. I knew we had given her a great gift.

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Does Morphine Speed Up Death At The End Of Life?

— What We Know

By Jennifer Anandanayagam

Morphine, an opioid medicine that is prescribed for pain relief, is not without controversy. When there are strong concerns about substance abuse and addiction to the narcotic, people often wonder things like “Is it safe to take morphine?” or “How long does morphine typically stay in your system?”

If you were to talk to hospice care workers, you’d probably hear that this powerful pain relief medication also gets a bad rap in their world. One of the common concerns is if giving morphine to your dying loved actually brings about their death sooner.

According to palliative care professionals, when proper dosage and timeliness of administration are followed, there is no basis for this fear. In fact, according to Hospice of the Chesapeake‘s Director of Education and Emergency Management, Elisabeth Smith, giving the right amount of morphine to someone who’s having trouble breathing might actually help them breathe better. For someone with breathing difficulty brought on by conditions like terminal lung disease, “it can feel like you’re drowning, gasping for air,” explained Smith. “Morphine opens the blood vessels allowing more blood circulation within the respiratory system. This makes it easier for the lungs to get the bad gases out and the good gases in. The patient becomes calm, their breathing slows down.”

Morphine doesn’t speed up death

It’s easy to see how the notion of morphine bringing death sooner to someone who’s dying came about. We can blame creative outlets like movies and books and also the lived experiences of some people who report seeing their loved ones’ lives slip away while on the opioid.

But morphine, when administered correctly, can bring a lot of relief and improve the end-of-life experience of someone, mainly because it blocks pain signals and helps with a lot of distressing sensations someone might be feeling in the final moments before death (per Crossroads Hospice & Palliative Care), like shortness of breath, pain, restlessness, and agitation.

Palliative care professionals are well-versed in how to start, sustain, and increase (when needed) morphine dosage according to the requirements and comfort levels of their patients (per Canadian Virtual Hospice). When someone is first put on the narcotic, the dose is very low and this dosage is maintained until the person gets used to it. Only a large dose can prove harmful (a fatal overdose might require 200 milligrams). That being said, morphine, like other pain medications, comes with its own set of side effects like drowsiness, digestive issues, stomach cramps, and weight loss (per Mayo Clinic). As explained by Elisabeth Smith from Hospice of the Chesapeake, sometimes suffering can prolong death too and it can look like the person passed away sooner when morphine was administered to them, simply because their discomfort was taken away and death was allowed to come in its own time.

Should you be concerned about administering morphine?

Ultimately, no one can answer that question but you, but hospice care workers urge loved ones to be correctly informed of the intricacies of why morphine is given in the first place and how it’s done in a professional setting. 

Pain is part of the dying process and if pain medications such as morphine can relieve some of the suffering, it might be one of the kindest things you can do for your loved one. You might be giving them a little more independence to be able to eat and drink without discomfort, sleep better, and even maintain better cognitive capabilities (per Vitas Healthcare). Ask questions from healthcare professionals and have them explain what the drug does exactly. Sometimes, having the right knowledge can assuage some of your fears. 

Dr. Daniel Lopez-Tan from Legacy Hospice shared that the idea that morphine speeds up death could have arisen because the opioid is commonly associated with end-of-life care. “The patient is dying of other causes and morphine only softens the symptoms of the last moments of life … One of the effects of morphine called respiratory depression does not occur with small, controlled doses of short-acting opioids, especially when under the supervision of a healthcare professional,” added the doctor.

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Why California Doesn’t Know How Many People Are Dying While Homeless

Eduardo Adrian Aviles Garza, known as ‘Monkey,’ prays at a memorial in December commemorating the 201 unhoused people who died in Santa Clara County in 2023.

By Vanessa Rancaño

Nearly a decade ago, David Modersbach had what he thought was a straightforward question: How many unhoused people had died that year?

The grants manager and his team at Alameda County Health Care for the Homeless knew people were dying on the streets, but they wanted more than anecdotal evidence; they wanted data that could show them the big picture and help them hone their strategies.

They queried the coroner’s bureau and were stunned by the response: only a single death had been reported.

“We realized there’s a lot of work to do,” Modersbach said.

What followed was a bootstrap campaign to fill the data gap. It took years, and the work was sometimes lonely, often tedious and consistently heartbreaking. When the team finally released its first report in 2022, detailing deaths from 2018–20, they counted 195 people in Alameda County who died while homeless in 2018, plus another 189 people with recent histories of homelessness whose housing status couldn’t be verified at their time of death.

a man with glasses and long hair, wearing a flannel shirt, sits behind a computer
David Modersbach works in his office in Oakland. Modersbach has spearheaded Alameda County’s efforts to count the deaths of unhoused residents.

As more Californians have fallen into homelessness — a number greater than 181,000 at last count (PDF) — more have died while unhoused, but the state’s ability to track these deaths and assess the scope of the problem hasn’t kept pace.

Spurred in part by Alameda County’s efforts, which are considered a national model for the field, the state recently began taking steps toward collecting this data. In 2022, California added a field to death records for homelessness status, and this year, a law went into effect that empowers counties to set up homeless death review committees to determine the root causes of homeless mortality.

California is among several jurisdictions across the country seeking this data. The pandemic put a spotlight on the health vulnerabilities accompanying homelessness, and that has led to growing national interest in the topic, said Barbara DiPietro, senior director of policy for the National Health Care for the Homeless Council. A recent study from researchers at the University of Pennsylvania and NYU found the death rate of people experiencing homelessness increased 238% between 2011 and 2020.

“One of the things that hopefully we took away from COVID is that homelessness is a public health issue,” she said. “Not only is living unhoused very dangerous and high risk for people experiencing homelessness, this isn’t good for communities either.”

Researchers said the data is critical in assessing whether the state’s public health interventions for people on the streets work.

“That is how we work to change things,” said Dr. Margot Kushel, director of the UCSF Benioff Housing and Homelessness Initiative. “One of the problems with not reporting it is that it makes it harder to act.”

But getting statewide — let alone national — data detailing the number of unhoused deaths requires meticulous reporting on the part of local agencies. In the case of Alameda County, it was a system Modersbach had to build from scratch.

How they count

For each homeless mortality report, Modersbach and his colleagues first scour thousands of county death records, searching for clues that suggest homelessness: words like “encampment,” “tent” and “shelter.” They then cross reference that list with a database of everyone in the county who has experienced homelessness in the past five years — itself a bespoke repository that draws on the agency’s healthcare data and records from the county’s shelter and homeless assistance programs. To capture anyone they might miss, they cull information from service providers, media accounts and a public online portal for submitting tips about deaths.

Since they began tracking homeless mortality, the team has traced an 80% increase in the number of deaths, which rose from 195 in 2018 to 351 in 2022, the most recent year for which data was reported. Over the same period, homelessness in the county jumped by nearly the same amount — or 77% — from 5,496 people to 9,747.

Behind the numbers are snapshots of how and where people are dying. A body found in a car. An overdose at an encampment. People mangled by cars or trains; others charred. Modersbach finds the tableau at once unsurprising and shocking.

“We see the same inequities in our mortality data that are reflected in homelessness,” he said. Black people are overrepresented, comprising 48% of the unhoused population and accounting for 44% of the deaths — though they represent only 19% of deaths in the county’s general population.

People who are unhoused die at five times the rate of those with housing and do so more than two decades sooner — at an average age of 52.

The data shapes decisions

Most of the deaths could be prevented, said Amy Garlin, Medical Director for Alameda County Health Care for the Homeless.

“You could say almost all of these deaths are preventable if you go far enough upstream,” Garlin said.

The largest share, 44% of the deaths among the homeless population, were caused by acute or chronic medical conditions, like heart disease, cancer, diabetes and infections. Some of those appear to have been more immediately avoidable, Garlin said. “If these people had had medical care, they may not have died this year.”

At an encampment along East 12th Street in Oakland, Angel Gonzalez, 40, remembered the friends he’d known there who had died. An asthma attack claimed one, exposure another and a third succumbed to a fever. Though Gonzalez said he didn’t know what had caused the fever, he said people are often sick, and rat bites are common.

“Health-wise here, it’s bad,” he said.

There’s frequent violence, too. Gonzalez described a drive-by shooting that killed one friend and wounded others. But what claims most people in the camp, he and others said, is overdoses.

“The fentanyl is killing mostly everybody,” Gonzalez said, explaining that people unwittingly use fentanyl-laced meth or other drugs. “It’s kind of scary.”

a man stands in front of some cars and tents and belongings in an encampment
Angel Gonzalez, 40, at an encampment on East 12th Street in Oakland, has seen many deaths at the camp, including from fevers, exposure, asthma attacks and gunshot wounds. But the most common cause by far is drug overdoses.

The mortality data compiled by Modersbach’s team reflects this, with an alarming rate of overdose deaths among unhoused residents that is 44 times the general population’s. In response, they’ve expanded their harm reduction services, focusing on naloxone distribution and installing dispensers in shelters.

At the East 12th Street camp, Gonzalez pointed out a purple dispenser on the street corner. Though Modersbach’s team had not installed it, it still proved lifesaving, Gonzalez said, when a friend recently used one of the naloxone sprays to reverse an overdose.

Alameda County Healthcare for the Homeless received a grant from the Centers for Disease Control and Prevention in 2023 to fund overdose response, a key part of their strategy to reduce mortality, and Modersbach credits their data for helping them get it.

In Minnesota, the only state with a statewide robust system for tracking homeless mortality, public health officials took a similar approach. A report on deaths between 2017 and 2021 showed unhoused people in the state were 10 times more likely than the general population to die of an overdose. Shortly after that data was released in 2023, state lawmakers passed drug overdose prevention legislation that expanded harm reduction and housing programs for people experiencing homelessness, decriminalized drug paraphernalia — a first for the U.S. — and funded “safe recovery sites” that offer clean needles, fentanyl testing and will eventually offer supervised drug consumption.

“Having the data was really useful in making the case for some of those things, both with legislators and with the public and advocates,” said Josh Leopold, senior advisor on health, homelessness and housing at the Minnesota Department of Health.

Alameda County’s latest homeless mortality report is now prompting the team to focus on how to extend palliative care services to unhoused people with terminal illnesses. Garlin estimates almost one-fifth of those who died in 2022 would likely have been eligible for hospice care.

What’s next in the ‘labor of love’

Modersbach’s team is also working to automate the most tedious aspects of compiling the county’s homeless mortality report and aims to launch a public dashboard later this year that will make information available quarterly.

“The biggest challenge is that we do not have timely data that we can act upon more quickly because of the workarounds that we have to do to get an accurate count,” Modersbach said. “We’re almost always looking backwards.”

The county’s latest tally, for 2022, was released at the beginning of 2024.

Santa Cruz, San Diego, San Mateo, Sacramento, Los Angeles and San Francisco are among the counties with varying degrees of reporting on homeless deaths. In Santa Clara County, an early champion of this work, a public dashboard tracking homeless mortality is updated nightly. A spokesperson for the Medical Examiner’s Office credited its partnership with a third-party vendor with allowing it to return results so quickly. So far this year, the dashboard listed 51 deaths.

Across the country, about two dozen jurisdictions have homeless mortality reports that are issued with some regularity, according to DiPietro of the National Healthcare for the Homeless Council, which tracks these efforts. But because the reporting isn’t standardized, it’s difficult to draw comparisons between them, she said.

a computer screen shows a tally of numbers
Statistics on homeless mortality in Alameda County on David Modersbach’s computer in his office in Oakland on March 15, 2024.

In California, despite the recent efforts to improve this tracking, limited resources will likely continue to hamper the reporting of homeless deaths. Since 2022, when the state added a field on death reports to indicate a person’s housing status, Modersbach has seen some evidence people are filling it out, but he worries many unhoused deaths will continue to go uncounted around the state because the funeral directors, coroners and physicians filling out the reports don’t often have the resources to determine whether someone was housed.

“This is a lonely, costly battle to just put all this information together, not a funded mandate,” he said. “It’s kind of a labor of love.”

In counties with well-established systems for tracking these deaths, Modersbach hopes AB 271, by Assemblymember Sharon Quirk-Silva (D-La Palma), will make a difference. The new law allows counties to create homeless death review committees and access sensitive information about people who died. The data, which includes medical, mental health and criminal records, goes beyond what Modersbach and his team have so far been able to collect, giving them greater insight into the circumstances surrounding a person’s death.

Alameda County assembled its death review committee last year, bringing together officials from several county agencies, homeless service providers and formerly unhoused people with the aim of finding ways to keep more people experiencing homelessness alive.

“It’s just getting started,” Modersbach said, “but this is the future for us.”

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Incurable but not hopeless

— How hope shapes patients’ awareness of their advanced cancer prognosis

Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies and exploring realistic goals.

By &

Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, prioritize cure as their highest hope.

Patients with incurable cancer wish to be informed about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.

Prognostic awareness

Physicians are ethically obligated to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. When oncologists talk to patients about prognosis, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years).

Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, will say the treatment goal is cure.

Previous research indicates that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication.

But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be ineffective, misguided or even harmful.

Patients with incurable cancer are more likely to receive end-of-life care concordant with their preferences when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.

In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose intravenous chemotherapy in the last two months of life, which would have been futile and worsened the quality of their end-of-life care.

How prognostic awareness is measured

Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a recent publication in the Journal of the National Cancer Institute, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.

In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).

A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.

These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.

The role of hope

Hope is a recognized coping strategy in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.

In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can re-direct hope to new goals beyond cure, such as hope for connection with others and enjoyment of daily pleasures.

Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.

Incorporating patient hope into prognostic awareness

We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a trinary concept: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.

We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.

This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.

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Thanatophobia

— Or the Fear of Dying, May Prevent You From Actually Living

BY Mara Santilli

Despite the best efforts of the death positivity movement, most people do not have a good time going to wakes or memorial services, and that’s completely normal. But for others, the thought of death—whether it’s a loved one dying or themselves—sparks intense fear and panic. “Fear is a natural and important human emotion,” says Mitchell L. Schare, PhD, ABPP, director of the Hofstra University Phobia and Trauma Clinic. But sometimes that fear of dying can be taken to extremes. “When it becomes inhibitory to living life, it becomes a phobia,” says Dr. Schare. Specifically, that phobia is known as thanatophobia, or the intense fear of death and dying.

“Fear is a natural and important human emotion. When it becomes inhibitory to living life, it becomes a phobia.” —Mitchell L. Schare, PhD, ABPP, director of the Hofstra University Phobia and Trauma Clinic

Thanatophobia (also called “death anxiety”) can be considered the “master fear,” says Dr. Schare, since so many other phobias—from fearing spiders to airplanes to illness—can be traced to a fear of death. But as with any kind of phobia, thanatophobia is more serious than just a distaste for thinking about death. It can cause avoidance of anything that might theoretically lead to death or situations in which family members or friends are dying.

There’s so much to unpack when it comes to thanatophobia. Here’s what you need to know about the fear of death, where it comes from, and how someone can cope with thanatophobia.

Is thanatophobia a mental illness?

Like other specific phobias, thanatophobia is considered a type of anxiety disorder1. According to the DSM-5-TR (aka the Diagnostic and Statistical Manual of Mental Disorders, the tool mental health professionals use to make diagnoses), a phobia is a “marked fear or anxiety about a specific object or situation (e.g., flying, heights, animals, receiving an injection, seeing blood).” For people with phobias (like thanatophobia), their fear or anxiety is way greater than the actual danger they face from their phobia, they go to great lengths to avoid it, and it cannot be explained by another mental health disorder.

Because thanatophobia is a type of anxiety disorder, mental health professionals will apply some of the same techniques used to treat anxiety disorders, such as cognitive behavioral therapy (CBT). (More on that in a bit!)

How common is thanatophobia?

There’s not a ton of data available on the general population, but an estimated 3 to 10 percent of people experience thanatophobia, according to the Cleveland Clinic.

Interestingly, research suggests that the prevalence of death anxiety changes with age in unexpected ways. One 2007 paper published in the journal Death Studies found that death anxiety spikes in young adults in their early ‘20s2, and then dips off. It also found that in women (but not men), death anxiety surges again in their ‘50s. While you might assume that older adults might have more fear of death (because they’re, you know, closer to the natural end of their lives), other research suggests that elderly patients have lower levels of death anxiety3 than their children.

What are the symptoms of thanatophobia?

“Thanatophobia [symptoms] can vary in prevalence depending on cultural, personal, and situational factors,” explains clinical psychologist Alexander Alvarado, PsyD, phobia specialist at Thriving Center of Psychology. Here are some of the common emotional and behavioral symptoms of thanatophobia:

  • Obsessive thoughts, including checking things constantly about your health and well-being (or that of your loved ones)
  • Avoidance behaviors around death or potentially dangerous situations (like refusing to drive or fly in airplanes, for example, out of fear of fatal accidents)
  • Severe anxiety (like feelings of dread, panic, etc.) when thinking about death. This might manifest as physical symptoms of anxiety in the form of heart palpitations, dizziness, chills, nausea, shortness of breath, etc.

This might seem a bit confusing initially; isn’t everyone afraid of dying, at least a little bit? “Having some degree of a fear of death can be functional—it might make you drive more carefully, or take extra care of yourself when you’re sick, so you can live a better quality of life,” says Dr. Schare.

But the tipping point into death anxiety can be how the anxiety manifests. Being so afraid of being in any situation that could involve death (no matter how remote the possibility) that you isolate yourself and never go out is likely closer to thanatophobia, Dr. Schare says as an example.

What causes thanatophobia?

As with any type of anxiety disorder, thanatophobia doesn’t always have a clear-cut cause. But experts believe there are some risk factors or potential triggers worth knowing.

A history of trauma or mental illness

“There isn’t a clear medical cause of thanatophobia, but it’s believed to be related to existential concerns and possibly a history of trauma,” says Dr. Alvarado. The trauma history could be related to significant life changes, such as a personal illness or near-death experience. (This could explain, for example, why nurses and emergency-services personnel had very high levels of death anxiety4 during the early years of the COVID-19 pandemic.) It’s also more likely to be prevalent in people who have a history of anxiety disorders.

Loved ones dying early

People who have experienced the death of a loved one, especially if they did not have a thorough understanding of death at that time, could be susceptible to developing thanatophobia, says clinical psychologist Tirrell De Gannes, PsyD, anxiety disorder specialist at Thriving Center of Psychology. It might be more pronounced for people who have an over-reliance on loved ones, he adds, and therefore fear what could happen if that person were to die.

Religious, spiritual, or philosophical beliefs

People have different religious, spiritual, and philosophical outlooks on death and what the aftermath of that process might look like, says Dr. Schare, whether that’s a spiritual “better place” that someone believes in, or a rebirth. Those beliefs might moderate the fear in some respects, he adds.

Other times, people believe in none of the above, and that doesn’t mean that they automatically have thanatophobia. It’s just that the fear of dying could be more pronounced if people emphasize the “unknown” aspect of what happens after death.

Interestingly, a 2017 meta-analysis published in the journal Religion, Brain & Behavior found the people who were least likely to have death anxiety were the atheists and the extremely religious5. “It may well be that atheism also provides comfort from death, or that people who are just not afraid of death aren’t compelled to seek religion,” said the researchers in a press release.

How is thanatophobia diagnosed?

If a mental health professional suspects you could have thanatophobia, or any phobia, the diagnosis involves clinical interviews. The therapist will ask you questions to assess how your fear (and its symptoms) impact your life, Dr. Alvarado says. They will take notes on how much death is a focus, adds Dr. De Gannes, whether or not the person has any sense of relief, and whether or not it affects their behaviors, such as isolating from other people or not participating in activities that could be a risk of injury or illness.

How is thanatophobia treated?

As with other specific phobias, thanatophobia is often treated with CBT. This research-backed practice will help patients challenge and change their negative thought patterns around death, says Dr. Alvarado.

Exposure and response prevention therapy (ERP) is a specific type of CBT that is commonly used with phobias. The goal is to help someone learn to manage their phobia by getting exposed to it gradually in a safe, controlled setting. “The goal is to reduce avoidance behaviors, and potentially introduce mindfulness practices to help cope with existential concerns,” adds Dr. Alvarado. No, this doesn’t involve seeing a dead body in therapy or something. Dr. De Gannes says a therapist might try the following exposures instead: talking about the topic of death, practicing having an end-of-life conversation with a loved one, and/or imagining consequences after the death of a relative.

ERP has varying intensities and styles, says Dr. Schare. It can be very literal, done in real-world environments. Think: a therapist taking someone who is afraid of bridges on a walk over a bridge, and speaking with them afterward to recap what happened and help the person understand that they are safe, he explains. Exposure therapy can also be done in virtual reality or imaginary environments, where the person, guided by a mental health professional, enters a scenario in which they could have a near-death experience, allowing them to confront that anxiety around it head-on.

Coping with thanatophobia

It is possible that the fear of life gets more pronounced with age, as people start to have more prominent health issues and start to become closer to death, says Dr. Schare. But the bottom line is that phobias and anxiety disorders can be cured, he says. The cognizance that you and your loved ones will die at some point does not go away, but people can become better equipped to cope with it.

Some coping strategies can include daily mindfulness, meditation, and journaling to help you stay present and focused on the here and now, as well as to process the fears, suggest Dr. Alvarado. You also might find relief and some additional coping skills from talking to other people in support groups about phobias, and of course from individual therapy.

Avoiding death and anything to do with it is not the most helpful way to cope with thanatophobia. “Shying away from the topic of death only increases the mystery and fear of it,” says Dr. De Gannes. He emphasizes that it’s important to normalize the concept of death in conversations to demystify the fear and help you continue to live your life.

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My advice for terminally ill Latinos like me

— You have options

By Jose Alejandro Lemuz

I am dying from prostate cancer that has spread to my bones.

But it’s comforting to know that I will likely soon die gently because I plan to use a medical aid-in-dying law championed by civil rights icon Dolores Huerta.

Thanks to the California End of Life Option Act, I will soon have the option to take a medication prescribed by my doctor that will allow me to die peacefully.

While I understand why my doctor wanted me to undergo more treatments, at this point in the rapid progression of the disease, the costs outweigh the benefits for me. Doctors should consult with patients about their care, not dictate it. Only I can determine how much suffering I can endure.

Less than three percent of the Californians who used the law in 2022 were Latinos, even though we represent 40% of the state’s population, and polling shows 68% of Hispanic Californians support medical aid in dying.

I suspect this disparity is because we have unequal access to this end-of-life care option because of healthcare system bias, cultural differences, and/or language barriers. I am a low-income body shop mechanic who does not speak English. My family doesn’t even have money for my burial.

Shamefully, I had to learn about this law through YouTube videos of a young Puerto Rican man, the late medical aid-in-dying advocate Miguel Carrasquillo, and TV news stories, instead of through my own doctors.

‘No More Treatment’

In December 2023, three months after trying to start the conversation about medical aid in dying with my healthcare team and after I had already endured numerous rounds of treatment since my diagnosis in 2018, I told my doctor:

“I don’t want any more treatment, I want you to respect my decision and I want you to help me. I’m asking that you declare me at the end stage because you’re the one who knows the treatment isn’t working for me anymore.”

I repeatedly asked my oncologist to estimate how long I have to live.

She declined to give me a prognosis. I showed my doctors a web page about this end-of-life care option to prompt the conversation with them.

They responded, “No, not yet…Keep taking more chemo.”

‘I Have Options’

I kept telling my doctors: “I have options.”

Why did my doctors not advise me about my healthcare options at the end of life, including my right to decline medical treatment for this incurable illness?

Hospice

For five years, I endured treatments to try to cure the cancer so I could work to provide for my two children and enjoy life.

Not anymore.

Last week [March 10], my doctors finally placed me in hospice care that focuses on alleviating some of the pain.

I am tired. I am weak. I have had a fever and convulsions for days. My frail and thin body can no longer withstand more than just a few steps.

Suffering is like being tortured.

Cancer consumes you little by little.

Unfortunately, the hospice care I am getting does not significantly reduce my suffering, so I will soon get the medication that will relieve me of this pain so I can die in peace.

I have spoken to God and asked Him to forgive my sins throughout my life.

I have talked to my children.

They understand and they support my decision.

They know it is my time to go.

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