I walk into the patient’s hospital room during evening rounds. He looks pale and tired, having recently completed a round of chemotherapy for his stage IV pancreatic cancer. His wife is at the bedside, scared and concerned about her husband’s rapid decline. I sit down to discuss goals of care when the patient immediately says, “I can’t do this anymore.” His wife responds immediately to the patient: “Of course you can.” As I delve deeper into the patient’s constant pain and discomfort, the conversation naturally shifts toward a comfort care-focused approach. After 55 minutes at the bedside, both patient and wife agree to further discuss this with the palliative care team. Ultimately, the medical team decided to transition the patient to hospice care.
Similar examples exist in outpatient practice. Take, for example, the 56-year-old female patient with metastatic non-small cell lung cancer who would clearly benefit from early institution of palliative care given the known mortality benefit. When you see her time and again, she engages in candid discussions with you as her physician that she would rather let “nature take its course.” She doesn’t want chemotherapy. She refused radiation. She continues to smoke. She doesn’t want her family to know, and palliative care options, though previously discussed with her, remain out of the question for her.
These are realistic examples from daily practice that present an interesting quagmire to the practicing physician as he or she treads the lines of patient autonomy and applies the evidence of what has been shown to clearly help a patient feel and live better, especially those with terminal illnesses. Tools exist to aid with these difficult conversations, and awareness among the patient, health care professionals, and family members makes all the difference in having these critical discussions. It’s often rather difficult to accept when you are taught to do something but come to the realization that sometimes doing nothing is what a patient prefers. In that moment, you realize that doing nothing means doing everything.
Sometimes practicing hospital medicine is a battle between life and death. Outpatient practice, too, is rife with such battles between the material and immaterial. Palliative and hospice care, though different, offer hope and comfort in some cases. Together, these medical disciplines not only alleviate physical suffering but also, through a conjoined care model, address the emotional and spiritual needs of patients and their families, guiding them through one of life’s most difficult journeys.
Palliative care is a specialized approach that aims to alleviate physical symptoms, manage pain effectively, and reduce the emotional and psychological distress experienced by individuals facing incurable illnesses, irrespective of their specific diagnosis. Palliative care is designed to improve the quality of life for both patients and their families. At the center of this is holistic care. A patient qualifies for hospice services if he or she has an illness that limits his or her life expectancy to six months or less.
Transitioning a patient from palliative care to hospice care is a crucial step that signifies a shift toward comfort-focused end-of-life treatment. Clear communication, compassionate support, and honoring patient and family preferences play critical roles in improving quality of life, increasing satisfaction with care, and enhancing emotional well-being during this transition. This process ultimately hinges on doing what is in the patient’s best interest and ensuring a death with dignity.
Physicians navigating palliative and hospice care face a unique set of emotional and professional challenges, such as handling end-of-life conversations with families to determine a patient’s goals of care, managing pain and symptom control effectively, and addressing spiritual distress in patients. However, within these challenges, there is a profound reward in making a significant difference in the final stages of a patient’s life. It has been previously heralded that caring for the dying patient is indeed a rewarding challenge given the intricacies it presents and doing so is crucially important is physician education. We now know that not only does education matter for physicians in these veins of practice, but it matters for nurses as well.
In palliative and hospice care, an interdisciplinary approach involves physicians overseeing medical decisions, nurses providing direct patient care and symptom management, social workers addressing psychosocial needs, chaplains offering spiritual support, and pharmacists ensuring proper medication management. Each team member contributes his or her expertise to create a comprehensive care plan that supports the physical, spiritual, and psychosocial well-being of the patient, highlighting the power of collaboration in providing holistic, patient-centered care.
Physicians navigating the complexities of palliative and hospice care must adopt practical strategies for effective patient management and compassionate support. Key strategies include fostering open communication with patients and their families, setting realistic expectations, and managing one’s own emotional well-being. Active listening, providing clear and empathic explanations, and involving the entire care team in medical decision-making are crucial for effective patient care.
Though we understand more as a physician community about employing palliative and hospice services for our patients when apropos to providing evidenced-based care, we are aware there is still work to be done to better the delivery of this care.
It has been documented that work is needed to further guide the integration of the family meeting specifically into oncology practice.
Recent data have shown how the institution of information technology and so-called “e-health” methods can be very helpful in individualizing care and extending palliative care services to patients.
We will all have these conversations. We will see patients like these. We charge all physicians to embrace the tenets of palliative care and hospice when appropriate for their patients and to learn more about the services offered in their hospitals, health systems, and practice structures to provide for the most optimal health outcomes.
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.
My mother, Jannèt, was 90 years old when she ended her life by means of euthanasia. For years she had been suffering from numerous serious and painful conditions that made her life miserable. She always worried about her health and was terrified of what the future undeniably held in store for her: more pain, more dependence on others, more suffering, more desperation.
On 20 June 2022 at 2pm she was visited by a doctor and a nurse. They had a last conversation with her, during which the doctor asked her if euthanasia was still what she wanted. My mother said yes. She had already decided that she would take the drink herself instead of being injected. She didn’t want to mentally burden the doctor more than necessary.
I was impressed by my mother’s courage in the face of death. She was completely calm, almost cheerful. Before the procedure started, she spoke briefly to us, her three daughters. She told us how it was important to take care of the Earth wisely, to recycle as much as possible and to look after one another. She then drank the small cup in one gulp. She fell asleep very quickly and 15 minutes later the doctor told us her heart had stopped beating. A long and tormented life had come to an end.
The country in which I live, the Netherlands, was the first in the world to legalise euthanasia in specific cases. That was in 2001. Assisted dying has become generally accepted in our country. We talk about it openly and we consider the possibility when situations call for it. We are grateful that this option exists, because it prevents so much pointless suffering. But we never talk about it lightly. Assisted dying has always remained something huge, something you don’t resort to lightheartedly.
‘I was impressed by my mother’s courage in the face of death.’ Renate van der Zee’s mother Jannèt
As a matter of fact, you can’t. In the Netherlands it will always remain a criminal offence to end a life. Exceptions are made only when a whole range of requirements are met. First of all, the patient must ask for it themselves and must therefore be mentally capable of asking for it. In addition, there are all kinds of due care requirements. For example, the doctor must be convinced that the request for assisted dying is voluntary and that the patient has carefully thought it through. The doctor must also be convinced that the patient’s suffering is hopeless and unbearable. That they can no longer heal, that it is not possible to alleviate their suffering and that there is no reasonable other solution. At least one other independent doctor must be consulted. That independent doctor will discuss the situation with the patient and form his or her own opinion about the situation.
Assisted dying is allowed only if a person is suffering owing to a medical cause, not if someone is simply tired of life or feels that their life is complete. My mother didn’t feel that her life was complete. There were still things that made her happy. She loved flowers and plants; she loved politics; she followed the news. But because of her deafness, incontinence and many other conditions she became socially isolated. Visits from friends became too much for her, and at a certain point even phone calls became impossible.
Walking became very difficult, and she grew afraid to go outside. She always loved to wander through a neighbourhood park, especially in springtime, when the bluebells and lilies of the valley bloomed abundantly. But she was no longer able to go there, not even in a wheelchair. She always enjoyed reading and watching nature programmes, but those things too became increasingly difficult. Her numerous ailments and her lack of mental resilience to deal with them made a normal daily existence impossible. And there was no prospect of improvement.
My mother’s euthanasia was a long process. Five years before her death, she told her GP that assisted dying was what she wanted if her life became unbearable. Over the years, my older sister discussed this wish with her during long conversations. She also took charge of all the conversations that were necessary before permission was finally given.
My mother wanted to celebrate her 90th birthday before she took leave of life. Her last birthday fell on Easter, which she regarded as meaningful. But what kind of birthday gift can you give to someone who will soon be gone? My older sister came up with the idea of making a book in which all her loved ones wrote down what she meant to them, or reminisced. She was very happy with that.
We sat close to her when she died. My younger sister took my mother’s hand and she held it tightly. The older sibling said in a soft voice, “You can close your eyes now, Mum.” That’s what my mother did. I sat there and tried not to cry. It’s not easy to witness your mother drinking a deadly potion and dying after 15 minutes.
The next day was the first day of summer. The sun was shining, the weather was beautiful. I woke up with the pain that my mother was gone. But also with a feeling of relief and deep gratitude that, after such an incredibly difficult life, she had been granted a painless and dignified death. I knew we had given her a great gift.
Alicia Mathlin felt like her body was no longer hers after several rounds of debilitating cancer treatment — so she decided to stop and focus on living her life. Matt Galloway talks to Mathlin about that decision and asks medical experts about the push for ‘common-sense oncology,’ which weighs the pros and cons of certain treatments against a patient’s quality of life.
Matt Galloway cuts through a sea of choice to bring you stories that transcend the news cycle and expand your worldview. It’s a meeting place of perspectives with a fresh take on issues that affect Canadians today.
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.
Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, prioritize cure as their highest hope.
Patients with incurable cancer wish to be informed about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.
Prognostic awareness
Physicians are ethically obligated to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. When oncologists talk to patients about prognosis, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years).
Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, will say the treatment goal is cure.
Previous research indicates that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication.
But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be ineffective, misguided or even harmful.
Patients with incurable cancer are more likely to receive end-of-life care concordant with their preferences when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.
In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose intravenous chemotherapy in the last two months of life, which would have been futile and worsened the quality of their end-of-life care.
How prognostic awareness is measured
Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a recent publication in the Journal of the National Cancer Institute, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.
In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).
A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.
These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.
The role of hope
Hope is a recognized coping strategy in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.
In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can re-direct hope to new goals beyond cure, such as hope for connection with others and enjoyment of daily pleasures.
Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.
Incorporating patient hope into prognostic awareness
We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a trinary concept: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.
We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.
This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.
Navigating the later phases of a loved one’s life may be an extremely emotional and difficult experience. During these difficult times, hospice home care arises as a source of comfort and support, providing a compassionate alternative to typical hospital medical treatment. This specialist care focuses on improving the quality of life for those in the final stages of a terminal illness by giving them the dignity, respect, and peace they deserve at home.
The Essentials of Hospice Home Care
Hospice home care exemplifies a compassionate approach to end-of-life care, providing a beacon of comfort and dignity to those in their final stages of life. Unlike traditional medical treatments geared at curing diseases, hospice care focuses on quality of life, providing comfort and support to both patients and their families. This comprehensive care paradigm is holistic, addressing patients’ psychological, social, and spiritual needs as well as the physical symptoms of their sickness.
At the heart of hospice home care is the dedication to respecting a patient’s choices, allowing them to spend their final days surrounded by loved ones in the familiar comfort of their own home. Pain treatment is an important part of this therapeutic method. Expertly trained healthcare experts work diligently to manage symptoms and reduce discomfort, allowing patients to live as fully and comfortably as possible.
Beyond physical care, hospice home care offers emotional and psychological assistance. Hospice staff provide counseling and grief assistance because they understand that patients and their families are going through one of the most difficult times of their lives. This guarantees that families are not alone in their journey, giving them a shoulder to lean on both during and after the patient’s life.
Spiritual care is also an important component of hospice home care, allowing patients and their families to examine life’s core concerns, make peace with unresolved issues, and, if applicable, strengthen their spiritual connections. This component of treatment is tailored to the individual’s beliefs and desires, with the goal of providing peace and meaning to patients and their loved ones during this momentous life experience.
Hospice care teams are multidisciplinary, made up of doctors, nurses, social workers, chaplains, therapists, and trained volunteers. Each member contributes their knowledge to build a support network that surrounds the patient and their family with care, love, and understanding. This multidisciplinary approach assures that every imaginable need—whether physical, emotional, or spiritual—is met.
In essence, hospice home care represents a paradigm shift in how we see the end of life. It is about appreciating the importance of every minute and allowing patients to spend time with loved ones, reflect on their life, and transition quietly. Hospice home care helps to reimagine the final chapter of life as one of love, respect, and compassion, rather than despair.
Who Can Benefit from Hospice Home Care?
Hospice care is designed for patients who are facing the end stages of a terminal illness, with a life expectancy of six months or less if the disease follows its usual course. However, it’s not just for the patients; hospice care also significantly benefits the families and caregivers by providing them with educational resources, emotional support, and respite care, helping them navigate through their grief and the caregiving process.
The Core Services Offered
The hospice care team typically includes doctors, nurses, social workers, spiritual advisors, counselors, and trained volunteers. They work together to tailor a care plan that meets the individual needs of each patient and family, which can include:
Pain and symptom management: Focusing on alleviating symptoms and ensuring the patient’s comfort.
Emotional and psychological support: Addressing the emotional, psychological, and spiritual needs of patients and their families.
Companionship and daily care assistance: Helping with daily activities and providing companionship to reduce feelings of isolation and anxiety.
Bereavement support: Offering grief counseling and support groups for families before and after their loved one’s passing.
How to Choose a Hospice Home Care Provider
Selecting the right hospice care provider is crucial. It involves considering factors such as the provider’s reputation, the quality of care, the availability of services, and the level of communication and support offered to families. It’s important to meet with several providers, ask questions, and choose one that aligns with the patient’s needs and family values.
The Impact of Hospice Home Care
The importance of hospice home care to patients and their families cannot be emphasized. This approach to end-of-life care has a significant impact on the quality of patients’ final days because it allows them to remain in the familiar and pleasant environment of their own homes. The environment has a significant impact on a person’s well-being, particularly throughout the final stages of life. Being at home rather than in a hospital allows patients to be surrounded by personal memories, things, and the people they care about, which can considerably reduce the emotional load of facing a terminal illness.
Hospice services provide patients with specialized care that addresses their physical, emotional, and spiritual needs. Pain and symptom control are prioritized to allow patients to interact with their relatives and enjoy their remaining time as comfortably as possible. This level of care empowers patients by offering them a sense of control over their lives and the dignity to choose their own treatment and how they want to spend their final days.
Navigating End-of-Life Care with Compassion and Dignity
Families benefit greatly from the extensive support that hospice home care offers. Going through a loved one’s end-of-life process can be emotionally and physically draining. Hospice care teams do more than just attend to the patient; they also assist families with counseling, respite care, and information about what to expect. This assistance is crucial in guiding families through the complexity of sorrow, loss, and the practical aspects of caring. It also allows the family to focus on being present with their loved one rather than being distracted by caregiving or decision-making.
Hospice home care provides significant support to families, which benefits them greatly. Going through a loved one’s end-of-life care can be both emotionally and physically taxing. Hospice care teams do more than just look after the patient; they also provide families with counseling, respite care, and information on what to expect. This help is critical in guiding families through the complexities of grief, loss, and the practical responsibilities of caregiving. It also enables the family to concentrate on being with their loved one rather than being distracted by caregiving or decision-making.
Component of hospice care cannot be overlooked. Families often find themselves in uncharted territory when a loved one enters hospice care. The hospice team’s role in educating families about what to expect, how to manage symptoms, and how to cope with grief is an essential service that can demystify the dying process and alleviate fears.
In essence, hospice home care profoundly impacts both patients and their families by providing a holistic approach to end-of-life care. It ensures that patients can live their final days with dignity and comfort, surrounded by love, while offering families the support, education, and guidance needed to navigate this challenging journey with grace. This model of care not only addresses the physical symptoms of the patient but also nurtures the emotional and spiritual well-being of everyone involved, making the inevitable transition a shared, supported, and deeply human experience.
Hospice home care displays the power of compassion and dignity in the face of life’s most challenging challenges. Hospice care focuses on comfort and quality of life, guiding patients and families through the end-of-life process with dignity and support. If you or a loved one are considering hospice care, remember that it is a decision that prioritizes love, dignity, and comfort during the most difficult times.
