Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.
“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”
Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.
“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”
Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.
Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.
Destigmatizing Hospice
While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.
Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.
“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”
Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”
Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.
Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.
On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”
Pediatric Hospice Care
When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.
In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.
“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”
Planning Ahead
Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”
Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.
As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations. —Zach Holt, CEO of Crater Community Hospice
Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.
Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.
Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.
“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”
Choosing a Hospice Provider
Start your hospice conversation with your health care team and ask about preferred partners.
Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
Talk to friends, family and neighbors about their experiences with hospice.
Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.
Caring for people with serious illnesses or chronic conditions is one of health care’s most complicated — and important — challenges.
While medicine continues to improve the way we treat diseases such as cancer or heart failure, it doesn’t always do a great job of caring for the things that matter most to patients and their families, such as physical and emotional distress.
And despite their frequent visits to doctors and hospitals, people living with serious medical conditions may still have unaddressed symptoms like pain or fatigue, and often report poor communication about those symptoms with their health care providers.
In other words, medicine is pretty great at treating the disease — but not as good at caring for the whole person.
That’s where palliative care specialists enter the picture, helping people live and feel better throughout the course of a serious illness.
Palliative care is a growing field of medicine that focuses on helping patients and their families cope with the physical and emotional stressors of advancing health problems. There is strong evidence that palliative care not only can improve quality of life for seriously ill patients, but also may reduce avoidable hospital admissions and enable patients to spend more time at home doing what matters most to them.
What is palliative care?
Palliative care focuses on providing people with relief from the symptoms and stressors of serious illnesses, such as cancer, chronic heart or lung disease, dementia, neurologic diseases like Parkinson’s, chronic liver disease, kidney failure, and many others.
Delivered by a specialty-trained team of doctors, nurses, social workers and other clinicians, palliative care provides expertise in symptom management, care coordination and communication, with the goal of improving quality of life for both the patient and their loved ones. Palliative care is appropriate for people at any age, and any stage of a serious illness.
Importantly, palliative care is not the same thing as hospice.
While palliative care is led by clinicians specifically trained in that field, it’s provided in collaboration with other health care providers, including primary care doctors and specialists — and, unlike hospice care, it can be administered at the same time that the patient is receiving curative treatment, and at any stage of serious illness from the time of initial diagnosis.
A person with cancer undergoing chemotherapy, for example, might benefit from palliative care, as would a person with lung disease seeking a lung transplant. In fact, when people facing a serious illness receive palliative care early in their disease and alongside treatment for their underlying condition, evidence demonstrates that it may even prolong survival.
Unfortunately, the historical misunderstanding about palliative care’s association with hospice — and the general lack of awareness about palliative medicine as a specialty, even among providers — means that millions of people who could benefit from palliative care don’t get it.
Worldwide, only about 14% of people who need palliative care currently receive it, according to the World Health Organization.
Where can I receive palliative care?
Palliative care is provided in all settings. To best meet the needs of their patients, palliative care teams see people in the hospital, outpatient clinics, nursing facilities — and even in the comfort of their own homes.
Providing home and community-based palliative care is not only convenient for patients and their families, but it also aims to reduce certain complications of advanced illness that would otherwise require emergency room visits and hospitalizations.
The benefits — patients who feel better, have fewer unnecessary hospitalizations and have more support during stressful times — are attractive to patients, families and insurers alike. As a result, insurance providers such as Medicare are changing the way they reimburse for home-based palliative services, while health systems and other agencies are actively expanding access to palliative care across Pennsylvania and nationwide.
Today, there are more options than ever for home- and community-based palliative care.
How palliative care can help: One patient’s story
Barbara had just retired from a career in management at a local grocery store. She looked forward to the added time retirement would give her to do what mattered most, like spend time with her family and tend to her garden.
Unfortunately, a new cancer diagnosis thwarted these plans, and she was soon spending more time in the chemotherapy suite than with her grandchildren or her prized perennials. Barbara’s pain and fatigue prevented her from being active outside and limited her appetite.
When her primary care provider referred her to palliative care, Barbara was unsure what to expect.
The palliative physician suggested several interventions to help Barbara feel and function better, including medication changes and gentle exercise techniques, and provided additional resources for her family. The palliative care team also helped Barbara understand her care options and encouraged her to speak up about her preferences to her other health care providers and to her loved ones, so that everyone was on the same page about supporting her goals.
In time, these interventions helped lessen Barbara’s symptoms and streamline her care. Throughout her cancer journey, the palliative care team has remained a constant layer of support for Barbara and her family. With close attention to her goals and symptoms, the palliative care team helps Barbara live as well as possible, despite having a serious illness.
If you or a loved one has a serious medical condition, ask your doctor or insurance provider about a referral to palliative care.
The number of U.S. residents aged 65 or older living with Alzheimer’s disease, the most common form of dementia, is expected to double from nearly 7 million to 14 million by 2050, according to a new report.
Dementia is a progressive disease which gets worse over time, eventually making it impossible to communicate or make decisions.
Jessica Empeño, national director of clinical engagement and education for Compassion & Choices, explained a new online tool can help people plan ahead so their wishes can be honored.
“The people around them — whether it be their family, their loved ones, their health care team — know what is important to that person and what types of care they hope for in the future,” Empeño emphasized.
Compassion & Choices’ free Dementia Values and Priorities tool is designed to help people communicate and document their future health care wishes before developing or in early-stage dementia. A series of questions and educational videos guides users through a range of changes commonly seen in the disease’s progression.
Kim Martin, a resident of the southwest Colorado town of Hesperus, used the tool after receiving her Alzheimer’s diagnosis. She had become increasingly anxious about what the future would bring and said the tool helped her specify her intentions so her husband and children would have no doubts about how to support her.
“Being able to get it all on paper and tell it to my family really improved my outlook and really improved my ability to move past that stage,” Martin noted.
Empeño stressed the value of documenting end-of-life health care decisions cannot be overstated, especially for women, who represent nearly two-thirds of Americans 65 or older living with Alzheimer’s. She encouraged people to use the tool, share the documents with the people you love and trust, and help them understand what is most important to you.
“While completing the legal documents is really important, the most important point is having the conversation,” Empeño pointed out. “The best way for you to get the kind of care that you want, especially at the end of life, is to have those really important conversations.”
— Toronto ‘death cafés’ offers a new way to get comfortable with that fact
Death-care practices vary according to culture and religion and many death doulas argue that in western cultures there’s still a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.
“We’ve heard the saying that it takes a village to raise a child. That village is equally important at the end of our life as it is in the beginning.”
After more than a decade living side by side on a quiet street in Toronto’s east end, Fiona* and her partner Lorraine* had become close friends with their neighbour Tony.
“Lorraine and Tony talked all the time,” said Fiona. “When he started getting older and lived on his own, she helped him with errands and grocery runs. I mowed his lawn.”
When Tony was diagnosed with inoperable cancer in 2018, Fiona started cooking for him and filling in when support workers and nurses weren’t on duty.
When it came to preparing to die, though, the couple decided Tony needed more help than they could offer.
They enlisted the help of a death doula: someone who is trained to help with emotional and physical support as well as education about the end-of-life process.
In the last couple of days of Tony’s life, Fiona slept on the couch next to his bed. The doula and Lorraine sat with him until he died.
What struck Fiona as most remarkable, she said, was the “ceremony of it all.” Lorraine and the doula washed Tony’s body and sat with him for hours after he passed.
“I think, in a lot of western cultures, people don’t want to hang out with a person’s body after they’ve gone,” she said. “This felt like helping him to move on and there was a level of comfort in it that helped all of us.”
Death-care practices vary according to culture and religion, and many doulas argue that in western cultures there’s a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.
That started to change 20 years ago with the first “death café,” an initiative launched by a recently widowed Swiss sociologist named Bernard Crettaz. The concept — usually a scheduled group discussion about death among people from all walks of life (not to be mistaken for grief counselling) — has since spread and evolved.
“Now there are ‘death salons,’ ‘death dialogues’ and ‘death book clubs,’” said Kayla Moryoussef, who works with Toronto’s Home Hospice Association and has her own practice, the Good Death Doula. “There’s even a ‘death over drafts’ thing where people meet in bars to drink and talk about dying and death.”
Probably the biggest change to the death café model in Toronto has been that, pre-pandemic, the Home Hospice Association’s death cafés were held in bricks and mortar spaces. When the pandemic forced the cafés online and they no longer had to worry about venues and attendance, it allowed the association to offer more niche programming, such as cafés for parents, pet lovers caregivers and “spoonies” (people experiencing chronic pain).
“I came up with the idea for a spoonies death café because, as a person with chronic illness and disability, I know my relationship with dying and death is fundamentally different than my peers, — especially peers my age,” said Moryoussef, who is now in her late 30s.
The mission at the Home Hospice Association is to offer distinct programming for different communities in the name of accessibility and equitability.
“The reason we even got into this death doula training, development and mobilization was because we could see that our health-care system was not going to be able to keep up,” said Tracey Robertson, a doula and co-founder of Toronto’s Home Hospice Association.
Even if our health-care system could bounce back from its current state, most medical training is about finding cures, and many doctors receive little or no training when it comes to talking about death.
“We’ve all heard the saying that it takes a village to raise a child — we always say that village is equally important at the end of our life as it is in the beginning — some may even say more important,” said Robertson.
Death cafés are part of the foundation for that vision, she explained, because you can only build that village after death is normalized and communities are more comfortable talking about it.
“All it requires is for all of us to just get a little bit more comfortable with the fact that we all are going to be there one day,” said Robertson. “How can we help our neighbour who is faced with the reality of sitting in a doctor’s office and hearing words none of us ever want to hear?”
Howard Kaplan, 56, wrote a “life letter” to his two daughters as part of his legacy.
Building a legacy — which benefits others and will survive beyond your lifetime — encourages you to think deeper and longer term
By Katherine Kam
As you think about which goals to pursue this year, consider one with lasting impact: building a legacy.
“What do I want to leave the world? How do I want to be remembered?” said Lisa Marchiano, a psychotherapist in Philadelphia. “When we think in terms of legacy, we’re really trying to use our imagination to think far beyond our own individual existence.”
Short-term goals such as starting a new hobby or saving money for a special vacation can be valuable, but a legacy mind-set requires different considerations. Building a legacy — which benefits others and will survive beyond your lifetime — encourages you to think deeper and longer term, experts say.
Legacy building does not have to be a grand project, it can be a simple one that speaks to your strengths and values. Some examples include:
Legacy building does not have to be a grand project, it can be a simple one that speaks to your strengths and values. Some examples include:
Howard Kaplan wrote a digital “life letter” to his two daughters. Reflecting on his own values, goals and life lessons benefited him, too, he said: “It was a gift for myself.”
Start a collection of recipes of favorite family dishes to give to younger relatives.
Support an organization that does vital work.
Mentor a youth who needs guidance and a mature perspective.
Leave your life lessons in story form for your loved ones or community.
Create scrapbooks and photo albums, clearly labeled with added written accounts, so memories won’t be forgotten.
Research your ancestry and create a family tree.
Use your talents to create a new family heirloom, for example, a wood sculpture or furniture, a painting or a piece of pottery.
Howard Kaplan — seen here with, from left, his daughter Hannah, wife Stephanie and daughter Sarah — wrote a digital “life letter” to his daughters as part of his legacy.
Howard Kaplan, a financial adviser in Cincinnati, comes from a tightknit family, a legacy, he says, he inherited from a maternal grandmother who prized extended kin gatherings.
As part of his own legacy, Kaplan, 56, wrote a digital document he called a “life letter” for his daughters, Hannah, 25, and Sarah, 22.
Reflecting on his own values, goals and life lessons benefited him, too, he said: “It was a gift for myself.”
“I wanted to tell my story,” Kaplan said, to let family and descendants know “why I made certain decisions and how I became who I am.” His family is close, but he had not expressed his thoughts to them in such a way, he said.
Among the top lessons for his offspring: Life is hard. “Not that that’s bad. It’s just the way it is,” he said. “There is no easy bus that’s coming for us, so we’re all going to have to work hard.”
>But he was also creative and playful. Kaplan loves music, he said, from Beethoven to AC/DC. He paired his life letter to his daughters with a playlist of 42 songs that hold meaning for him. His favorite: “Family Affair” by Mary J. Blige. “The beat is amazing,” he said, but he’s also drawn to the lyrics: “We don’t need no haters. We’re just trying to love one another.”
Volunteer and work legacies matter, too
You don’t need to have children to embrace a legacy resolution. For example, you can support or volunteer at an organization, including one that might outlive you.
Charming Evelyn, 56, grew up in the Caribbean, where conservation was a way of life. Households, including hers, collected rainwater in large storage tanks for domestic use, she said.
“We do not waste,” she said. People reused plastic containers and turned empty cookie tins into sewing boxes. “There was already a level of recycling happening,” she said.
Evelyn parlayed that tradition of conservation and a love of nature into a long-standing volunteer commitment with the Sierra Club, a grass-roots environmental organization. She volunteers as the chair of the water committee for the Sierra Club Angeles Chapter and has worked on issues such as water conservation and depletion of groundwater.
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.”
