When Amy Pickard’s mother died suddenly in 2012, she was understandably grief-stricken. But she also felt frustrated and overwhelmed, since her mother didn’t plan ahead for her death.
“I would have given anything to talk to my mom just one more time, but it wasn’t to hear her tell me she loved me; I needed her to tell me the friggin’ Wi-Fi password!” Pickard says.
Since her mother lived far away, Pickard didn’t know what bills needed to be paid or what to do with her mother’s now-deceased body.
“I just said, can you put her [body] on ice? Because I have no idea what is going on,” Pickard recalls. In an effort to normalize death and create a death-positive movement, Pickard teaches people how to throw a death party and add some humor to the inevitable and often daunting end-of-life duties.
Dealing with uncomfortable death duties
Pickard refers to all of the different decisions that need to be made and tasks that need to be completed after someone dies as “death duties.” She says these duties are “the hellscape of details forced upon a grieving loved one after their person dies.” This includes responsibilities such as cleaning their house and sorting their belongings, making funeral arrangements, settling their finances and closing their estate.
After her horrible experience with her mother’s death duties, Pickard wanted to help others avoid the same issues. “I was preaching the gospel of advanced planning to my friends,” she says. Surprised at how her friends took to the lessons, Pickard thought, “I have a message here. And it’s landing.”
In 2014, she created a long list of questions related to when someone dies. The list was a booklet called Departure File, which she still sells today. She included, “all the minute, everyday things that came up that I had no answer to, like ‘Do you have a storage space?’”
“Good To Go!” death parties are changing the narrative
Pickard realized most people think of death and dying as morbid and creepy, so they don’t like to talk about it. She also knew most people would probably not want to answer the questions in the Departure File, so she decided to create a party where everyone filled out the answers.
“I thought, ‘I’m a good communicator, I’m an extrovert and I have a sense of humor, so why not have a party?’” she says.
During the parties, Pickard tapped into her sense of humor by creating death-themed soundtracks with songs like “Another One Bites the Dust” and “Stairway to Heaven.” She also had everyone bring a potluck dish based on the recipe of a loved one.
She didn’t have a business plan when she started; instead, she learned as she went along and as her business evolved. Her parties are now referred to as “Good To Go!” parties, though guests have also described them as “Death Tupperware Parties” or “Fete du Mort” shindigs.
People who attended the initial parties “were blown away by it—all of us felt a beautiful kind of electricity in the room,” Pickard recalls, noting that no one else was hosting these types of events. “It is unbelievable how important this is, and how in denial our entire society is over the one absolute positive thing that we know with 100% certainty is going to happen,” she says.
Normalizing the death-positive movement
In a bid to overturn this cultural thinking, Pickard considers herself to be part of the death-positive movement—a way of thinking that encourages people to have end-of-life celebrations and speak openly about death, dying and corpses.
The modern-day concept of the death-positive movement dates back to the 1970s, but the death-positive movement was further popularized in 2011 by Caitlin Doughty, a mortician who believes people should change their perceptions about death. On her website, The Order of the Good Death, Doughty says death should be a part of your life. “Accepting that death itself is natural, but the death anxiety and terror of modern culture are not,” Doughty states on her website.
When Pickard’s father died, the experience was opposite that of her mother’s death. Pickard attributes that to the fact that he filled out the Departure File and talked openly with her about advanced planning. When she first created the Departure File, she wanted to help others and didn’t consider how it could one day help her. Like her mother, her father died suddenly. When he was intubated in the hospital, she gave a copy of his Departure File that included his advanced care directive to the staff. Their response was, “No one ever does this. This is amazing.”
Before Pickard’s father passed away, she said to him, “You know that everything is taken care of.” She says the look of peace on his face in response brought her comfort. It was at that moment she understood that advanced planning also brings peace to a person before they die.
“It was such a weird, ironic moment that the company that I created for others actually helped me and helped my grief,” she says. “With [my dad’s] instruction, I felt empowered. I felt I was honoring him.” The directions he provided also eliminated any uncertainty she may have faced making decisions about duties related to his death.
Planning for death is planning your life
Even though “Good To Go!” parties are humorous and lighthearted, there are still times, understandably, when people are grieving. Pickard handles these situations by offering a tissue and trying to help them understand that, “when you plan for your death, it’s actually planning your life.”
She explains that people prepare for natural disasters by stocking up on candles and getting a generator, but they don’t plan for their death. “We spend more time building a burrito than we do thinking about what we want to happen when we die,” she says. Advanced planning is a way of letting people know how you want to be remembered, she adds.
Pickard recently expanded her business to help people declutter their homes while simultaneously creating advanced planning regarding their material things. She refers to this task as legacy organizing.
“I am helping people organize their homes for their death,” she says. She explains that her services are similar to that of a “death concierge.” She says, “I encourage people to clean out their places with their families. And that way, you make new memories. It’s actually fun.”
This lighthearted approach to death and advanced planning underscores Pickard’s mission with “Good To Go!” parties. “I’m not a doctor; I’m not a lawyer. I am just literally a girl that’s lived through grief and wants to help other people get through it too.”
Studies show that when cancer returns, patients are often quite willing to receive toxic treatments that offer minimal potential benefit.
By by Mikkael A. Sekeres, MD
My patient was in his early 30s and his leukemia had returned again following yet another round of treatment.
He was a poster child for the recently reported rise in cancer rates in the young, and had just asked me what chemotherapy cocktail I could devise for him next, to try to rid him of his cancer.
I hesitated before answering. Oncologists are notorious for always being willing to recommend to our patients one more course of treatment, even when the chances of success are negligible.
One grim joke even poses the question, “Why are coffins nailed shut?” The answer: “To keep oncologists from giving another round of chemotherapy.”
This unflattering stereotype is unfortunately backed by data. In one analysis of patients with a cancer diagnosis treated at one of 280 cancer clinics in the United States between 2011 and 2020, 39 percent received cancer therapy within 30 days of death, and 17 percent within two weeks of dying, with no decrease in those rates from 2015 to 2019.
My patient had received his leukemia diagnosis five years earlier, and initially, following chemotherapy, his cancer had entered a remission. He and his parents were farmers from Latin America and relocated at the time to the United States to focus on his treatment. When the leukemia returned after a year, he underwent a bone-marrow transplant, and that seemed to do the trick, at least for a while.
But then it reared its ugly head a couple of years later, and we worked to slay it with yet more chemotherapy and another transplant.
That victory was short-lived, though, and multiple rounds of unsuccessful treatment later, here we were. The last course had decimated his blood counts, landing him in the hospital with an infection, a bad one that he had barely survived.
Does it help patients live longer or better?
Giving chemotherapy toward the end of life would be justifiable if we benefited our patients by enabling them to live longer, or live better. While that’s our hope, it often isn’t the case.
Recognizing this, the Centers for Medicare & Medicaid Services has identified giving chemotherapy within two weeks of death as a poor-quality indicator that may adversely affect payments to hospitals. As a consequence, cancer doctors are discouraged from offering treatment to patients at the end of life, and can get in trouble with hospital administrators for doing so.
Despite the CMS measure, though, over the past three years the percentage of patients treated at the end of life hasn’t changed much, with one recent study actually showing an increase in patients treated.
Why do we do it? Perhaps optimism is part of our nature, and what draws us to a career in oncology. I focus on the positive, and that may actually help my patients. Other studies have shown that optimism in people with cancer is associated with better quality of life, and even longer survival.
And perhaps the data on giving chemotherapy close to a person’s last days on Earth, and the CMS quality metric, are unfair, and insensitive to the realities of how doctors and patients make decisions.
I stared back into the eyes of my young patient and then into those of his father, who was about my age. He looked kindly, with a thick, bushy white mustache, a red tattersall shirt, and work jeans. This man adored his son, accompanying him to every appointment, and always warmly clasped my right hand with both of his in thanks for our medical care — a gesture I felt unworthy to receive, given my inability to eradicate his son’s leukemia.
If our roles were reversed, how would I react if my son’s cancer doctor told me that the option for more chemotherapy was off the table, as CMS recommends, given the less than 10 percent chance that it would work, and the much higher likelihood that it could harm?
Wouldn’t I demand that the doctor pursue any and all means necessary to save my son’s life? Patients often do, and studies have shown that patients with cancer that has returned are quite willing to receive toxic cancer treatments that promise minimal potential benefit.
We discussed giving another round of chemotherapy, though I told my patient and his family that I was reluctant to administer it given the vanishingly slim chance that it would help. We also talked about my patient enrolling in a clinical trial of an experimental drug. And finally, we talked about palliative care and hospice, my preferred path forward.
“You’ve given us a lot to think about,” my patient told me as he and his family got up to leave, even smiling a bit at the understatement. His father came over to me and clasped my hand warmly, as usual.
But a couple of days later, despite how well he looked in clinic, my patient developed an infection that landed him in the intensive care unit. If I had given him chemotherapy, we would have blamed the treatment for the hospitalization.
But the cause actually lay with his underlying cancer, which had compromised his immune system, making him more vulnerable to infections. This time, my patient became sick enough that he decided enough was enough, and he accepted palliative care.
For many of my patients at the end of life who doggedly pursue that “one more round” of chemotherapy, a hospitalization becomes the sentinel event convincing them that the side effects of treatment just aren’t worth it anymore. It’s then no wonder people die so soon after their final treatment and time in the hospital.
It isn’t justifiable to give people with cancer chemotherapy when it is futile, just to be able to say “we tried something.” That’s what the CMS quality metric is trying to prevent. But in doing so, it shouldn’t interfere with a patient’s opportunity to come to that decision themselves.
He has an easy smile, blue eyes and a life-threatening bone infection in one arm. Grateful for treatment, he jokes with the medical intern each morning. A friend, a fellow doctor, is supervising the man’s care. We both work as internists at a public hospital in the medical safety net, a loose term for institutions that disproportionately serve patients on Medicaid or without insurance. You could describe the safety net in another way, too, as a place that holds up a mirror to our nation.
What is reflected can be difficult to face. It’s this: After learning that antibiotics aren’t eradicating his infection and amputation is the only chance for cure, the man withdraws, says barely a word to the intern. When she asks what he’s thinking, his reply is so tentative that she has to prompt him to repeat himself. Now with a clear voice, he tells her that if his arm must be amputated, he doesn’t want to live. She doesn’t understand what it’s like to survive on the streets, he continues. With a disability, he’ll be a target — robbed, assaulted. He’d rather die, unless, he says later, someone can find him a permanent apartment. In that case, he’ll proceed with the amputation.
The psychiatrists evaluate him. He’s not suicidal. His reasoning is logical. The social workers search for rooms, but in San Francisco far more people need long-term rehousing than the available units can accommodate. That the medical care the patient is receiving exceeds the cost of a year’s rent makes no practical difference. Eventually, the palliative care doctors see him. He transitions to hospice and dies.
A death certificate would say he died of sepsis from a bone infection, but my friend and I have a term for the illness that killed him: end-stage poverty. We needed to coin a phrase because so many of our patients die of the same thing.
Safety-net hospitals and clinics care for a population heavilyskewed toward the poor, recent immigrants and people of color. The budgets of these places are forevertight. And anyone who works in them could tell you that illness in our patients isn’t just a biological phenomenon. It’s the manifestation of social inequality in people’s bodies.
Neglecting this fact can make otherwise meticulous care fail. That’s why, on one busy night, a medical student on my team is scouring websites and LinkedIn. She’s not shirking her duties. In fact, she’s one of the best students I’ve ever taught.
This week she’s caring for a retired low-wage worker with strokes and likely early dementia who was found sleeping in the street. He abandoned his rent-controlled apartment when electrolyte and kidney problems triggered a period of severe confusion that has since been resolved. Now, with little savings, he has nowhere to go. A respite center can receive patients like him when it has vacancies. The alternative is a shelter bed. He’s nearly 90 years old.
Medical textbooks usually don’t discuss fixing your patient’s housing. They seldom include making sure your patient has enough food and some way to get to a clinic. But textbooks miss what my med students don’t: that people die for lack of these basics.
People struggle to keep wounds clean. Their medications get stolen. They sicken from poor diet, undervaccination and repeated psychological trauma. Forced to focus on short-term survival and often lacking cellphones, they miss appointments for everything from Pap smears to chemotherapy. They fall ill in myriad ways — and fall through the cracks in just as many.
Early in his hospitalization, our retired patient mentions a daughter, from whom he’s been estranged for years. He doesn’t know any contact details, just her name. It’s a long shot, but we wonder if she can take him in.
The med student has one mission: find her.
I love reading about medical advances. I’m blown away that with a brain implant, a person who’s paralyzed can move a robotic arm and that surgeons recently transplanted a genetically modified pig kidney into a man on dialysis. This is the best of American innovation and cause for celebration. But breakthroughs like these won’t fix the fact that despite spending the highest percentage of its G.D.P. on health care among O.E.C.D. nations, the United States has a life expectancy years lower than comparable nations—the U.K. and Canada— and a rate of preventable death far higher.
The solution to that problem is messy, incremental, protean and inglorious. It requires massive investment in housing, addiction treatment, free and low-barrier health care and social services. It calls for just as much innovation in the social realm as in the biomedical, for acknowledgment that inequities — based on race, class, primary language and other categories — mediate how disease becomes embodied. If health care is interpreted in the truest sense of caring for people’s health, it must be a practice that extends well beyond the boundaries of hospitals and clinics.
Meanwhile, on the ground, we make do. Though the social workers are excellent and try valiantly, there are too few of them, both in my hospital and throughout a country that devalues and underfunds their profession. And so the medical student spends hours helping the family of a newly arrived Filipino immigrant navigate the health insurance system. Without her efforts, he wouldn’t get treatment for acute hepatitis C. Another patient, who is in her 20s, can’t afford rent after losing her job because of repeated hospitalizations for pancreatitis — but she can’t get the pancreatic operation she needs without a home in which to recuperate. I phone an eviction defense lawyer friend; the young woman eventually gets surgery.
Sorting out housing and insurance isn’t the best use of my skill set or that of the medical students and residents, but our efforts can be rewarding. The internet turned up the work email of the daughter of the retired man. Her house was a little cramped with his grandchildren, she said, but she would make room. The medical student came in beaming.
In these cases we succeeded; in many others we don’t. Safety-net hospitals can feel like the rapids foreshadowing a waterfall, the final common destination to which people facing inequities are swept by forces beyond their control. We try our hardest to fish them out, but sometimes we can’t do much more than toss them a life jacket or maybe a barrel and hope for the best.
I used to teach residents about the principles of internal medicine — sodium disturbances, delirium management, antibiotics. I still do, but these days I also teach about other topics — tapping community resources, thinking creatively about barriers and troubleshooting how our patients can continue to get better after leaving the supports of the hospital.
When we debrief, residents tell me how much they struggle with the moral dissonance of working in a system in which the best medicine they can provide often falls short. They’re right about how much it hurts, so I don’t know exactly what to say to them. Perhaps I never will.
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.
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.
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.
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.
In Mexico, sugar skulls are made to represent the soul of a departed loved one
Rituals around preparing and eating ‘grief food’ bring comfort to mourners – from Russia to Sri Lanka – and connect them to the dead.
By Annie Hariharan
In Mexico, pan de muerto (bread of the dead) is a special sweet bread made annually for the Day of the Dead in early November.
Shaped like a roll and topped with a cross and a nub – meant to symbolise bones and teardrops or hearts – the pan de muerto is both an offering to the deceased and a treat for everyone, explains Kati Hogarth. She grew up in Mexico but now calls Australia home and works in the creative industry. “It’s a bit sweet”, she adds, “to lure the spirits to come and share it with us.”
Pan de Muerto is sweetened ‘to lure the spirits to come and share it with us’ says Kati Hogarth who grew up in Mexico
Food is closely connected to our rituals around death. Whether we are inviting spirits to commune with us or preparing feasts for the grieving, food provides solace, comfort and nourishment – often of the soul – at a time of mourning.
For example, in countries like the US and Australia, friends and neighbours will drop off casseroles or lasagnas, understanding that the bereaved often don’t have time or energy to make food.
Of course, many countries do not turn to a meat-and-cheese carbfest to mark a loved one’s passing. But those acts of cooking and eating – those heartfelt rituals around food – hold significant meaning when it comes to burials, mourning and even the remembrance of ancestors.
A Mexican altar to departed family members includes sugar skulls made to represent the souls of departed loved ones
Take koliva (also spelled kolyva, koljivo or coliva), a wheat-based dish that makes an appearance at Orthodox Christian funerals – from Greece to Russia – and is served in similar yet slightly different ways.
In Russia, the spelling is different – kutia – but Anastasia Kaissidis, a Russian mother of two who now calls Australia home, explains that it is essentially the same dish.
“It is like porridge but more sticky than watery. We make it with boiled wheat, barley and sometimes rice. Then, we add honey for the sweet taste and dried fruits like sultanas or berries and walnuts,” Kaissidis says. “It is really easy and quick to make. There’s no meat in it and most people would have ingredients like wheat at home.” A meatless dish makes it more affordable as well.
‘It’s like porridge but more sticky than watery,’ says Anastasia Kaissidis, a Russian mother of two
In other places like Greece or Macedonia, sugar is sometimes added as a sweetener, as well as other dried fruits and nuts like pomegranate seeds or walnuts. The dried fruits and nuts not only provide textural and colour contrast but they can be used to decorate the top of the dish in the shape of a cross or initials of the deceased.
Kutia is steeped in the rituals of a Russian Christian Orthodox funeral. The family of the deceased – “usually the women”, Kaissidis says – are responsible for making it for the people who drop by to pay their respects. “After the burial, people will come to the family’s house, so they will prepare food. Traditionally, kutia is the first dish we eat before anything else,” Kaissidis explains. “It will be scooped into small bowls so that everyone can have some. You just need a little taste and after that, you can eat the rest of the food on the table.”
Koliva is the Macedonian version of Kutia – both feature prominently following death in Christian Orthodox cultures
The dish also has a symbolic meaning. “In Christianity, we believe life is eternal and we celebrate resurrection,” Kaissidis explains. “The wheat symbolises new life because it must be buried before it can grow again, else it will just rot. The honey or sugar symbolises that life will be sweet in heaven.”
Georgi Velkovski, a Macedonian living in Belgium knows this communal dish as koliva. He describes it as a sticky, sweet paste that is a bit bland and not to his taste, “like eating a piece of bread if you squeeze it and chew on it”.
“The family of the deceased would serve it on a plate along with tasting spoons. They would go around and offer koliva to visitors. People would take a spoonful of the dish and place the dirty spoons in a separate cup or container. This way, everyone is sharing the koliva,” he explains.
Anastasia Kaissidis, a Russian mother of two, talks about grief food in Russian Orthodox communities
When people don’t have the space to accommodate mourners in their own
houses, they may go to a cafe or restaurant. “When my grandmother died, there were about 20 close family members attending the funeral and they came from everywhere. Instead of having the meal at home, we pre-ordered food from a cafe, including kutia, because it was easier,” Kaissidis shares.
Although koliva is simple, cheap and filling, neither Kaissidis nor Velkovski will make or eat it outside of funerals – although other people in the Russian or Macedonian community may serve it during religious celebrations or even Christmas.
For Kaissidis, this is a sacred dish that is associated with funerals and not something to make for a casual Saturday brunch. “Sometimes, I make my kids porridge with honey because it is kid-friendly. I suppose it is similar to kutia, just a bit waterier but I wouldn’t call it kutia,” she says with a laugh.
Communal cooking in Sri Lanka
While the Orthodox Christian community communes with one sacred dish after a funeral, in Sri Lankan Buddhist culture, everyone comes together to cook full meals in support of the bereaved family.
When there is a death in the community, particularly in villages with close-knit communities, someone will take charge and start by collecting funds. “People give based on their finances and this collection will be used for the rites,” explains Zinara Rathnayake, a journalist and social media manager from Sri Lanka. On the last day of the ceremony, Sri Lankan Buddhist families typically cremate the bodies of the deceased although some may also choose a burial. This is then followed by a feast or ceremony called Mala Batha which is a meal provided to people who came over to pay their respects to the deceased.
Zinara Rathnayake says a Sri Lankan funeral feast is ‘a feast for the living’ but also, some believe, a ‘feast for the spirit who might still be lingering’
“If there’s enough space in the family’s house, they will cook the meal inside. If not, they will pick a house with a large garden to cook outside with a makeshift fire stove,” Rathnayake explains.
While this is a feast for the living, some people believe it is also a feast for the spirit who might still be lingering; this is a way to feed them before they head off to the other world.
The meal features food that people cook and eat daily – like dahl, dried fish curry, potato dishes, brinjal (aubergine) dishes, leafy green salads and papadums – rather than symbolic, funeral-specific dishes. These dishes are meatless. Meat is often considered “impure” so a vegetarian diet is de facto for periods of mourning.
This will vary from villages and communities, but people instinctively know the role they need to play; they may have done something similar for weddings or festivals. “The men might go off to buy the provisions and others will bring a large pot with utensils. Someone will cook rice, others will chop the vegetables. There is a mutual understanding,” says Ratnayake.
Vegetable curry is often served following a funeral in Sri Lanka
Following the Mala Batha, neighbours will continue to support the bereaved family by cooking for them. “The food part is taken care of by the community because the family is not in a state where they can cook,” says Ratnayake. “People will make potato curry or grated coconut sambol, buy large boxes of biscuits, make tea or coffee.” As Ratnayake explains, this is partly because traditionally, there is no concept of freezing and reheating food here; food is eaten on the same day it is cooked.
Offerings to the deceased in Malaysian-Chinese culture
Sometimes, the food that is prepared during funerals is not for the living. Instead, each element of the meal represents the deceased’s journey into the afterlife.
Chin (who asked not to use her real name to protect her family’s feelings) has a Chinese-Buddhist-Taoist background and lives in a country town in Australia. When her mother passed away in Malaysia, she became aware of the numerous rituals she had to fulfil and the symbolic food she had to place by her mother’s altar.
“We had her wake at a funeral centre,” Chin explains, “It was a three-day wake followed by a burial. There was someone at the centre to guide us on rituals and procedures, including what to wear. Most modern Chinese people don’t know what to do for these rituals!”
Dishes at a funeral in Malaysian-Chinese communities include cooked meats, particularly a boiled chicken placed at the centre of the table and representing the spirit’s flight to the beyond
The standard dishes for Chinese funerals in Malaysia include cooked meats: a roasted pig symbolises eternity and good luck, a boiled chicken represents the spirit’s flight to the beyond and a roast duck symbolises protection for the spirit as it crosses the three rivers (Gold River, Silver River and the Life-Death River) that are synonymous in Chinese-Buddhist belief with giving and supporting life. Everything is served with rice, which represents family and respect.
Among the dishes that Chin prepared for her mother’s funeral was a stir-fry vegetarian dish called Buddha’s Delight, plus her mother’s favourite tea and fruit.
Buddha’s Delight, a stir-fried vegetarian dish
“There had to be five different colours of fruits, so we had green grapes, yellow pears, red apples, white peaches and black Chinese chestnuts,” Chin explains. The idea is to invite the deceased to eat along with the living.
One of the foods that is closely associated with Malaysian-Chinese funerals is pink and yellow steamed buns. These buns also make an appearance during the Hungry Ghost Festival; a month-long period when the Chinese community makes offerings to appease and honour spirits that roam the earth. Like koliva, these soft buns are also made with pantry staples – flour, yeast, sugar, baking powder, and shortening – and steamed, since most Southeast Asian kitchens do not have ovens.
Pink and yellow steamed buns are frequently served at the feast following a Malaysian-Chinese funeral
Family members are also encouraged to offer food that the deceased used to enjoy. “On day seven, we laid out the dining table with my mother’s favourite food because symbolically, this is the last meal we are giving to her spirit,” Chin says. The idea is that after this feast, the spirit has to leave our world.
During this time, Chin and her family were expected to stay in their rooms from 10pm to 2am.
Afterwards, “we threw away the whole banquet because it is [considered] bad luck to eat it”, Chin says. “This is the part I did not like because it’s so wasteful.”
The “bad luck” is a mix of superstition – not wanting to eat something that a spirit has feasted on; and concern about food hygiene – not eating something that has been sitting at room temperature in the tropics.
Chin understands the purpose of rituals, but also finds some of them “ridiculous”.
“I rolled my eyes a lot but we had to ‘do the right thing for the deceased’. When my father passed away, my mother did the same thing for him and it was clear that this is what she wanted too.”
There are few as well acquainted with the dying, and their regrets, as death doulas. Also known as end-of-life doulas, they provide support to people through terminal or life-limiting illnesses by improving their quality of life, and death.
This encompasses everything from helping with logistics to providing emotional support to those at the end of life and their loved ones.
i spoke to three death doulas to understand the biggest regrets of the dying, the living who love them, and steps we could take to avoid those same regrets and have a better end of life.
Staying in unhappy (and sexless) relationships
Emma Clare, who is a chartered psychologist and death doula, says that the most common, though unspoken, regret she hears is about relationships.
“I often hear people say that they wish they’d left either unfulfilling or unhappy relationships sooner. A lot of people have regrets about spending a large part of their life in situations that didn’t feel true to themselves or have any fulfilment.”
She says when we’re confronting death, we feel a lack of intimacy and closeness acutely – including sexual intimacy.
“As humans we look for intimacy and that doesn’t go away because we’re dying. If anything, it increases because people are aware they have a limited time left and they want to have that connection with other people.”
Not downsizing or decluttering
“We all know we’re going to die, but we just put it to the side, even with a terminal diagnosis,” says Jane Depledge, a doula based in North Powys, Wales. When patients are told that treatment is going to stop, that lack of preparation “hits them”, she says. Getting a will in place, transferring over health insurance, or discussing their wishes are all simple things that we don’t want to face, but will feel better for it.
Emma Clare adds that this includes very practical decisions.
“People wish they’d downsized their home earlier and cleared out their stuff, and now they’re aware their often adult children are going to have to deal with that and feel a big sense of guilt. That means regret from the family too: they’re then left sorting that out and haven’t had the conversation about what was and wasn’t treasured and should be kept.”
Being in hospital instead of at home
“People often don’t realise they have choices”, says Depledge, so when a person is dying they panic and send them to hospital. Though for some people hospital care is essential, she says it is always worth asking and looking into ways their loved one could die at home.
Not being prepared
The emotional and physical burden of caring for someone at the end of life can take its toll on both the carer and the patient, who may feel huge guilt at being ‘a burden’. People often regret being inadequately prepared for everything that needs juggling, and not realising what support they can get.
“Carers can claim immediate Government grants to care for someone who is dying,” explains Depledge. “Knowing that could have enabled someone to take time off work or give up work to care for and be with a loved one.”
Not being able to say goodbye to friends
When a person is dying, they tend to want to surround themself with the things and people they love most – but so often, they are lonely, says Depledge.
“I think a lot of people avoid visiting people when they get a terminal diagnosis because they worry they don’t know what to say,” she explains. “But actually I hear a lot of upset from the people who are dying, saying that they feel like their friends have gone quiet or disappeared and they feel very lonely. And that’s needlessly lonely because at the funeral there are lots of people there.”
Not saying how you really felt
Amanda Waring, a death doula working in West Sussex says that the biggest regret she comes across is from people who feel they didn’t “heal their relationship, or speak frankly”.
“Regret stems from a lack of honesty. This is true even for exceptionally difficult conversations where someone has wronged the other and the only catharsis is if you bring it into the open and it takes a lot of courage.”
She says this can range from apologising for harsh words spoken at a bedside, to being honest about deeper rooted, historical conflicts, to sharing feelings of love and pride that were perhaps not made clear before.
“Bravely speaking up and trusting your gut is the key to avoiding all regrets really,” adds Emma Clare.
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.
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.
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.
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.”
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.
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.”
