Individuals and their families embark on a dramatic journey characterized by substantial emotional and physical changes as life nears its end, especially in the 6 months before death symptoms. Understanding these changes is crucial for providing compassionate care, preparing emotionally, and ensuring the individual’s remaining time is as comfortable and meaningful as possible. This article delves into the significant transformations that occur in the six months leading up to death, offering valuable insights for family members, healthcare providers, and caregivers. By exploring these critical adjustments, we aim to support those navigating this challenging period, helping them to offer the best care and preparation for their loved ones as they approach life’s final chapter.
Identifying Modifications in the Body
There is a noticeable decrease in physical stamina and general levels of activity as people get closer to the end of their life. This phase, which is frequently marked by extreme exhaustion, calls for longer stretches of time spent sleeping, with many people finding themselves confined to bed for the most of the day. Loss of mobility causes more than just the inability to move; it also causes atrophy and weakness in the muscles. Daily tasks that were once completed with ease now require significant effort or are outright impossible as a result of these changes. The body uses its energy stores most efficiently for vital processes, leaving little for physical activity. The patient may gradually stop engaging in physical activities, require more assistance with movement, and slow down overall, according to caregivers. Caretakers must have a sympathetic knowledge of this period and prioritize comfort and safety to reduce the dangers of reduced physical activity, including pressure sores and falls.
Variations in Hydration and Appetite
The body’s need for food and water significantly reduces throughout the final months of life. This decrease in hunger is a normal aspect of the dying process as the body starts to progressively shut down and conserve energy. It’s common for family members and caregivers to see their loved ones eating and drinking less, which raises worries about dehydration and weight loss. It’s important to understand, though, that imposing food or liquids on someone can be uncomfortable and may not be helpful at this point. Providing modest, regular, nutrient-dense meals instead can support the maintenance of comfort and energy levels. Small sips of water or ice chips, depending on the person’s capacity for safe swallowing, should be used to promote hydration. Care plans may also change to accommodate the individual’s evolving tastes; for example, softer foods or foods high in water content may be recommended to help with hydration. It becomes crucial to honor the person’s desires and make sure any interventions respect their dignity and level of comfort. It is possible for caregivers to support a person’s quality of life throughout a substantial transition by being aware of these changes.
Handling Pain and Discomfort
For those who are nearing the end of their life, maintaining their dignity and quality of life during these final months of life requires effective management of pain and discomfort. There are many different reasons why someone may have pain, including the development of long-term ailments that have followed them throughout their life or new problems like bedsores brought on by extended periods of immobility. Discomfort can also be a result of internal changes that take place as the body gets ready to die. To address these problems, a thorough approach to pain treatment is needed. Medication is essential, and doctors carefully adjust dosages to reduce pain without having significant negative effects. Apart from pharmacological therapies, physical therapy can aid in preserving maximum mobility, mitigating the risk of problems such as joint stiffness and bedsores. The efficacy of alternative therapies, such massage and acupuncture, in treating pain and discomfort has also been acknowledged. These treatments can provide a feeling of alleviation and wellness, completing the picture of conventional pain management techniques. It is ensured that care is person-centered, holistic, and respectful of the individual’s end-of-life journey by customizing these interventions to the individual’s needs and choices.
Respiratory Modifications and Breathing Patterns
Respiratory function changes are an important part of dying, and they frequently get worse in the last several months. People can suffer from a variety of changes in their breathing patterns, such as short, fast bursts of breathing or, on the other hand, prolonged periods of time without breathing (a condition called apnea). Both the person going through the changes and loved ones witnessing these symptoms may find these changes to be uncomfortable. It’s crucial to realize that these breathing modifications are a normal aspect of the body’s dying process. Healthcare providers can help patients manage their respiratory distress symptoms by giving them extra oxygen or medicines to make breathing easier. Non-pharmacological measures, such as placing the patient to maximize comfort and lung expansion, can also be very important. It might be less distressing for family members to witness these changes if they are informed and reassured about what to expect and how to support them. Kind words on the normalcy of these breathing modifications can assist family and caregivers get ready, enabling them to offer comfort and support throughout this time.
Handling Emotional Shifts
People’s social interactions tend to noticeably change as they get closer to the end of their life. They might start to isolate themselves from their friends and family, spending more time alone themselves thinking back on their life’s experiences. This withdrawal stage is a deep, reflective time when people may reflect on their lives, accomplishments, and regrets. It’s a deeply meaningful period of time that’s critical to their acceptance of the end of their life. Although this behavior is occasionally misinterpreted as depression, it is usually a normal part of the psychological death-preparation process. Caregivers and loved ones should respect this need for privacy while still being accessible to offer support, as this period of introspection facilitates a great deal of internal healing and tranquility.
The last few months of life might also force people to face and work through old grudges or disagreements. Feelings of remorse, rage, or the urge for reconciliation are examples of emotional manifestations that may occur during this period. Not only can these times offer the dying person a chance for deep healing, but they can also bring great healing to friends and family. This process can be aided by candid, nonjudgmental dialogue that provides an opportunity for reconciliation and forgiveness. A peaceful transition can be ensured by this emotional expression and conclusion, which releases the person from any burdens that may have been weighing heavy on their heart. It emphasizes how crucial it is to listen with compassion and extend unconditional forgiveness in order to help everyone feel at peace and fulfilled.
Each person’s path towards the end of life is distinct and characterized by a complex interaction of emotional and physical changes. Comprehending these modifications enables family members and caregivers to offer the most efficient and considerate assistance. Making sure that the last few months are marked with dignity and as little discomfort as possible takes precedence, opening the door for a peaceful and accepting transition. A calm transition can be facilitated by being prepared for and conscious of these changes, which enable meaningful interactions and assistance catered to the needs and preferences of the individual.
Morphine, an opioid medicine that is prescribed for pain relief, is not without controversy. When there are strong concerns about substance abuse and addiction to the narcotic, people often wonder things like “Is it safe to take morphine?” or “How long does morphine typically stay in your system?”
If you were to talk to hospice care workers, you’d probably hear that this powerful pain relief medication also gets a bad rap in their world. One of the common concerns is if giving morphine to your dying loved actually brings about their death sooner.
According to palliative care professionals, when proper dosage and timeliness of administration are followed, there is no basis for this fear. In fact, according to Hospice of the Chesapeake‘s Director of Education and Emergency Management, Elisabeth Smith, giving the right amount of morphine to someone who’s having trouble breathing might actually help them breathe better. For someone with breathing difficulty brought on by conditions like terminal lung disease, “it can feel like you’re drowning, gasping for air,” explained Smith. “Morphine opens the blood vessels allowing more blood circulation within the respiratory system. This makes it easier for the lungs to get the bad gases out and the good gases in. The patient becomes calm, their breathing slows down.”
Morphine doesn’t speed up death
It’s easy to see how the notion of morphine bringing death sooner to someone who’s dying came about. We can blame creative outlets like movies and books and also the lived experiences of some people who report seeing their loved ones’ lives slip away while on the opioid.
But morphine, when administered correctly, can bring a lot of relief and improve the end-of-life experience of someone, mainly because it blocks pain signals and helps with a lot of distressing sensations someone might be feeling in the final moments before death (per Crossroads Hospice & Palliative Care), like shortness of breath, pain, restlessness, and agitation.
Palliative care professionals are well-versed in how to start, sustain, and increase (when needed) morphine dosage according to the requirements and comfort levels of their patients (per Canadian Virtual Hospice). When someone is first put on the narcotic, the dose is very low and this dosage is maintained until the person gets used to it. Only a large dose can prove harmful (a fatal overdose might require 200 milligrams). That being said, morphine, like other pain medications, comes with its own set of side effects like drowsiness, digestive issues, stomach cramps, and weight loss (per Mayo Clinic). As explained by Elisabeth Smith from Hospice of the Chesapeake, sometimes suffering can prolong death too and it can look like the person passed away sooner when morphine was administered to them, simply because their discomfort was taken away and death was allowed to come in its own time.
Should you be concerned about administering morphine?
Ultimately, no one can answer that question but you, but hospice care workers urge loved ones to be correctly informed of the intricacies of why morphine is given in the first place and how it’s done in a professional setting.
Pain is part of the dying process and if pain medications such as morphine can relieve some of the suffering, it might be one of the kindest things you can do for your loved one. You might be giving them a little more independence to be able to eat and drink without discomfort, sleep better, and even maintain better cognitive capabilities (per Vitas Healthcare). Ask questions from healthcare professionals and have them explain what the drug does exactly. Sometimes, having the right knowledge can assuage some of your fears.
Dr. Daniel Lopez-Tan from Legacy Hospice shared that the idea that morphine speeds up death could have arisen because the opioid is commonly associated with end-of-life care. “The patient is dying of other causes and morphine only softens the symptoms of the last moments of life … One of the effects of morphine called respiratory depression does not occur with small, controlled doses of short-acting opioids, especially when under the supervision of a healthcare professional,” added the doctor.
Veterinarian Karen Meyers pulls her black minivan into the driveway of a townhouse in Maryland’s National Harbor. The home, in a gated community, is perched on a windy bluff not far from restaurants, bars, a casino — places of revelry.
The vet carries her brown doctor’s bag inside. There, she meets her patient: Xochitl, known as Xochi, an 11-year-old boxer-Great Dane mix weighing around 80 pounds.
Xochi, recently diagnosed with cancer, is struggling. A film covers her right eye. She had been bleeding from her mouth, refusing to eat. Now she stands in the townhouse’s living room, mournfully greeting family members who have come to say goodbye.
Xochi climbs onto the living room’s leather couch and lies down. Owner Eden Gaines and her family gather around her. Meyers opens her bag.
Meyers explains the procedure. First, Xochi will be injected with a sedative to make her fall asleep. Five to 10 minutes later, Meyers will administer sodium pentobarbital, whichwill euthanize her. But Xochi would feel no pain, Meyers assures the family.
She asks whether anyone has any questions.
No one does.
“Here we go,” she says.
Meyers says she has euthanized 1,500 animals in four years.
Pet adoption spiked during the pandemic, with nearly 1 in 5 American households taking animals in and spending far more on them than pet owners did decades ago. With more beasts in our lives — as companions, as emotional support animals, as the beneficiaries of pet trusts — it only makes sense that their owners want their final moments in their lives to be as peaceful and painless as possible.
That’s where Meyers comes in. Working with Lap of Love, a company that provides veterinarian referrals for at-home pet euthanasia, she travels from house to house in the D.C. region offering grieving families’ animals what the word euthanasia means: “good death.” In four years, she has euthanized 1,500 animals: cats, dogs, rabbits, rats. Some had been with their owners since childhood. Some had traveled the world with them. Some were their owner’s sole companion.
Meyers has observed death rituals that include praying, burning incense, wrapping a deceased pet’s body in a white sheet, and opening a window for a pet’s spirit to exit. She has listened to owners read poems or letters to their pets and cried along with them.
“When people hear what I do for living, it sounds sad,” Meyers says. “But it’s strangely rewarding. … You give pets a peaceful experience. It’s a final gift.”<
Meyers has been surrounded by a menagerie all her life. Growing up, she usually had a dog and one or two cats; at various times, she’s also had two hamsters, two turtles, a guinea pig, a bird and four chickens. Right now, she has Wren, a 6-year-old Cavalier King Charles spaniel; Travis, a 3-year-old pug; Brinkley, a 13-year-old rat terrier Chihuahua; and Pablo, a red-belly parrot.
Right before the pandemic, Meyers decided to shift to doing euthanasia full time. She had been a veterinarian for more thantwo decades, and pet euthanasia turned out to be less stressful than working in an office while raising two children. In-home euthanasia can be easier on animals and their owners than office appointments with other sick animals and their distressed owners crowded around.
The first injection makes Xochi fall asleep.Rameses Gaines holds a piece of Xochi’s fur.
Meyers administers the first shot in Xochi’s back. The dog, already lying down with her head on Gaines’s lap, turns to glance at Meyers as if mildly annoyed.
Then, the dog relaxes.
Minutes pass.
Using a hair clipper, Meyers shaves an inch-long strip of one of Xochi’s legs and inserts a small IV line. After confirming that the family wants to continue, Meyers administers the second shot, the one with the fatal dose.
Gaines looks at the spot on Xochi’s leg where the IV had been inserted.
“It’s amazing how gray she became,” Gaines says.
Meyers holds a stethoscope to Xochi’s chest. “Xochi has her wings,” she says.
The family cries.
So does Meyers.
She and Gaines embrace.
Meyers maneuvers Xochi onto a stretcher and covers her with a blanket. With the help of Gaines’s sons, she loads the dog into her car. Eventually Xochi will be cremated and her ashes returned to the Gaines family.
Death is a part of life, Meyers says.
“Many times, people will comment how a human family member passed, and it was so painful at the end, and this is peaceful by contrast,” she says.
They tell her, she says, that they wish they could go the same way.
Rameses Gaines touches a mold of Xochi’s paw print.
— Researchers are documenting a phenomenon that seems to help dying people, as well as those they leave behind.
By Phoebe Zerwick
Chris Kerr was 12 when he first observed a deathbed vision. His memory of that summer in 1974 is blurred, but not the sense of mystery he felt at the bedside of his dying father. Throughout Kerr’s childhood in Toronto, his father, a surgeon, was too busy to spend much time with his son, except for an annual fishing trip they took, just the two of them, to the Canadian wilderness. Gaunt and weakened by cancer at 42, his father reached for the buttons on Kerr’s shirt, fiddled with them and said something about getting ready to catch the plane to their cabin in the woods. “I knew intuitively, I knew wherever he was, must be a good place because we were going fishing,” Kerr told me.
As he moved to touch his father, Kerr felt a hand on his shoulder. A priest had followed him into the hospital room and was now leading him away, telling him his father was delusional. Kerr’s father died early the next morning. Kerr now calls what he witnessed an end-of-life vision. His father wasn’t delusional, he believes. His mind was taking him to a time and place where he and his son could be together, in the wilds of northern Canada. And the priest, he feels, made a mistake, one that many other caregivers make, of dismissing the moment as a break with reality, as something from which the boy required protection.
It would be more than 40 years before Kerr felt compelled to speak about that evening in the hospital room. He had followed his father, and three generations before him, into medicine and was working at Hospice & Palliative Care Buffalo, where he was the chief medical officer and conducted research on end-of-life visions. It wasn’t until he gave a TEDx Talk in 2015 that he shared the story of his father’s death. Pacing the stage in the sport coat he always wears, he told the audience: “My point here is, I didn’t choose this topic of dying. I feel it has chosen or followed me.” He went on: “When I was present at the bedside of a dying person, I was confronted by what I had seen and tried so hard to forget from my childhood. I saw dying patients reaching and calling out to mothers, and to fathers, and to children, many of whom hadn’t been seen for many years. But what was remarkable was so many of them looked at peace.”
The talk received millions of views and thousands of comments, many from nurses grateful that someone in the medical field validated what they have long understood. Others, too, posted personal stories of having witnessed loved ones’ visions in their final days. For them, Kerr’s message was a kind of confirmation of something they instinctively knew — that deathbed visions are real, can provide comfort, even heal past trauma. That they can, in some cases, feel transcendent. That our minds are capable of conjuring images that help us, at the end, make sense of our lives.
Nothing in Kerr’s medical training prepared him for his first shift at Hospice Buffalo one Saturday morning in the spring of 1999. He had earned a degree from the Medical College of Ohio while working on a Ph.D. in neurobiology. After a residency in internal medicine, Kerr started a fellowship in cardiology in Buffalo. To earn extra money to support his wife and two young daughters, he took a part-time job with Hospice Buffalo. Until then, Kerr had worked in the conventional medical system, focused on patients who were often tethered to machines or heavily medicated. If they recounted visions, he had no time to listen. But in the quiet of Hospice, Kerr found himself in the presence of something he hadn’t seen since his father’s death: patients who spoke of people and places visible only to them. “So just like with my father, there’s just this feeling of reverence, of something that wasn’t understood but certainly felt,” he says.
During one of his shifts, Kerr was checking on a 70-year-old woman named Mary, whose grown children had gathered in her room, drinking wine to lighten the mood. Without warning, Kerr remembers, Mary sat up in her bed and crossed her arms at her chest. “Danny,” she cooed, kissing and cuddling a baby only she could see. At first, her children were confused. There was no Danny in the family, no baby in their mother’s arms. But they could sense that whatever their mother was experiencing brought her a sense of calm. Kerr later learned that long before her four children were born, Mary lost a baby in childbirth. She never spoke of it with her children, but now she was, through a vision, seemingly addressing that loss.
In observing Mary’s final days at Hospice, Kerr found his calling. “I was disillusioned by the assembly-line nature of medicine,” Kerr told me. “This felt like a more humane and dignified model of care.” He quit cardiology to work full time at the bedsides of dying patients. Many of them described visions that drew from their lives and seemed to hold meaning, unlike hallucinations resulting from medication, or delusional, incoherent thinking, which can also occur at the end of life. But Kerr couldn’t persuade other doctors, even young residents making the rounds with him at Hospice, of their value. They wanted scientific proof.
At the time, only a handful of published medical studies had documented deathbed visions, and they largely relied on secondhand reports from doctors and other caregivers rather than accounts from patients themselves. On a flight home from a conference, Kerr outlined a study of his own, and in 2010, a research fellow, Anne Banas, signed on to conduct it with him. Like Kerr, Banas had a family member who, before his death, experienced visions — a grandfather who imagined himself in a train station with his brothers.
The study wasn’t designed to answer how these visions differ neurologically from hallucinations or delusions. Rather, Kerr saw his role as chronicler of his patients’ experiences. Borrowing from social-science research methods, Kerr, Banas and their colleagues based their study on daily interviews with patients in the 22-bed inpatient unit at the Hospice campus in the hope of capturing the frequency and varied subject matter of their visions. Patients were screened to ensure that they were lucid and not in a confused or delirious state. The research, published in 2014 in The Journal of Palliative Medicine, found that visions are far more common and frequent than other researchers had found, with an astonishing 88 percent of patients reporting at least one vision. (Later studies in Japan, India, Sweden and Australia confirm that visions are common. The percentages range from about 20 to 80 percent, though a majority of these studies rely on interviews with caregivers and not patients.)
In the last 10 years, Kerr has hired a permanent research team who expanded the studies to include interviews with patients receiving hospice care at home and with their families, deepening the researchers’ understanding of the variety and profundity of these visions. They can occur while patients are asleep or fully conscious. Dead family members figure most prominently, and by contrast, visions involving religious themes are exceedingly rare. Patients often relive seminal moments from their lives, including joyful experiences of falling in love and painful ones of rejection. Some dream of the unresolved tasks of daily life, like paying bills or raising children. Visions also entail past or imagined journeys — whether long car trips or short walks to school. Regardless of the subject matter, the visions, patients say, feel real and entirely unique compared with anything else they’ve ever experienced. They can begin days, even weeks, before death. Most significant, as people near the end of their lives, the frequency of visions increases, further centering on deceased people or pets. It is these final visions that provide patients, and their loved ones, with profound meaning and solace.
Kerr’s latest research is focused on the emotional transformation he has often observed in patients who experience such visions. The first in this series of studies, published in 2019, measured psychological and spiritual growth among two groups of hospice patients: those who had visions and a control group of those who did not. Patients rated their agreement with statements including, “I changed my priorities about what is important in life,” or “I have a better understanding of spiritual matters.” Those who experienced end-of-life visions agreed more strongly with those statements, suggesting that the visions sparked inner change even at the end of life. “It’s the most remarkable of our studies,” Kerr told me. “It highlights the paradox of dying, that while there is physical deterioration, they are growing and finding meaning. It highlights what patients are telling us, that they are being put back together.”
In the many conversations Kerr and I have had over the past year, the contradiction between medicine’s demand for evidence and the ineffable quality of his patients’ experiences came up repeatedly. He was first struck by this tension about a year before the publication of his first study, during a visit with a World War II veteran named John who was tormented throughout his life by nightmares that took him back to the beaches of Normandy on D-Day. John had been part of a rescue mission to bring wounded soldiers to England by ship and leave those too far gone to die. The nightmares continued through his dying days, until he dreamed of being discharged from the Army. In a second dream, a fallen soldier appeared to John to tell him that his comrades would soon come to “get” him. The nightmares ended after that.
Kerr has been nagged ever since by the inadequacy of science, and of language, to fully capture the mysteries of the mind. “We were so caught up in trying to quantify and give structure to something so deeply spiritual, and really, we were just bystanders, witnesses to this,” he says. “It feels a little small to be filling in forms when you’re looking at a 90-something-year-old veteran who is back in time 70 years having an experience you can’t even understand.” When Kerr talks about his research at conferences, nurses tend to nod their heads in approval; doctors roll their eyes in disbelief. He finds that skeptics often understand the research best when they watch taped interviews with patients.
What’s striking about this footage, which dates back to Kerr’s early work in 2008, is not so much the content of the visions but rather the patients’ demeanor. “There’s an absence of fear,” Kerr says. A teenage girl’s face lights up as she describes a dream in which she and her deceased aunt were in a castle playing with Barbie dolls. A man dying of cancer talks about his wife, who died several years earlier and who comes to him in his dreams, always in blue. She waves. She smiles. That’s it. But in the moment, he seems to be transported to another time or place.
Kerr has often observed that in the very end, dying people lose interest in the activities that preoccupied them in life and turn toward those they love. As to why, Kerr can only speculate. In his 2020 book, “Death Is but a Dream,” he concludes that the love his patients find in dying often brings them to a place that some call enlightenment and others call God. “Time seems to vanish,” he told me. “The people who loved you well, secured you and contributed to who you are are still accessible at a spiritual and psychological level.”
That was the case with Connor O’Neil, who died at the age of 10 in 2022 and whose parents Kerr and I visited in their home. They told us that just two days before his death, their son called out the name of a family friend who, without the boy’s knowledge, had just died. “Do you know where you are?” Connor’s mother asked. “Heaven,” the boy replied. Connor had barely spoken in days or moved without help, but in that moment, he sat up under his own strength and threw his arms around her neck. “Mommy, I love you,” he said.
Kerr’s research finds that such moments, which transcend the often-painful physical decline in the last days of life, help parents like the O’Neils and other relatives grieve even unfathomable loss. “I don’t know where I would be without that closure, or that gift that was given to us,” Connor’s father told us. “It’s hard enough with it.” As Kerr explains, “It’s the difference between being wounded and soothed.”
In June, I visited the adult daughter of a patient who died at home just days earlier. We sat in her mother’s living room, looking out on the patio and bird feeders that had given the mother so much joy. Three days before her mother’s death, the daughter was straightening up the room when her mother began to speak more lucidly than she had in days. The daughter crawled into her mother’s bed, held her hand and listened. Her mother first spoke to the daughter’s father, whom she could see in the far corner of the room, handsome as ever. She then started speaking with her second husband, visible only to her, yet real enough for the daughter to ask whether he was smoking his pipe. “Can’t you smell it?” her mother replied. Even in the retelling, the moment felt sacred. “I will never, ever forget it,” the daughter told me. “It was so beautiful.”
I also met one of Banas’s patients, Peggy Haloski, who had enrolled in hospice for home care services just days earlier, after doctors at the cancer hospital in Buffalo found blood clots throughout her body, a sign that the yearlong treatment had stopped working. It was time for her husband, Stephen, to keep her comfortable at home, with their two greyhounds.
Stephen led Banas and me to the family room, where Peggy lay on the couch. Banas knelt on the floor, checked her patient’s catheter, reduced her prescriptions so there were fewer pills for her to swallow every day and ordered a numbing cream for pain in her tailbone. She also asked about her visions.
The nurse on call that weekend witnessed Peggy speaking with her dead mother.
“She was standing over here,” Peggy told Banas, gesturing toward the corner of the room.
“Was that the only time you saw her?” Banas asked.
“So far.”
“Do you think you’ll be seeing her more?”
“I will. I will, considering what’s going on.”
Peggy sank deeper into the couch and closed her eyes, recounting another visit from the dead, this time by the first greyhound she and Stephen adopted. “I’m at peace with everybody. I’m happy,” she said. “It’s not time yet. I know it’s not time, but it’s coming.”
When my mother, Chloe Zerwick, was dying in 2018, I had never heard of end-of-life visions. I was acting on intuition when her caregivers started telling me about what we were then calling hallucinations. Mom was 95 and living in her Hudson Valley home under hospice care, with lung disease and congestive heart failure, barely able to leave her bed. The hospice doctor prescribed an opioid for pain and put her on antipsychotic and anti-anxiety medicines to tame the so-called hallucinations he worried were preventing her from sleeping. It is possible that some of these medications caused Mom’s visions, but as Kerr has explained, drug-induced hallucinations do not rule out naturally occurring visions. They can coexist.
In my mother’s case, I inherently understood that her imaginary life was something to honor. I knew what medicine-induced hallucinations looked and felt like. About 10 years before her death, Mom fell and injured her spine. Doctors in the local hospital put her on an opioid to control the pain, which left her acting like a different person. There were spiders crawling on the hospital wall, she said. She mistook her roommate’s bed for a train platform. Worse, she denied that I loved her or ever did. Once we took her off the medicine, the hallucinations vanished.
The visions she was having at the end of her life were entirely different; they were connected to the long life she had led and brought a deep sense of comfort and delight. “You know, for the first time in my life I have no worries,” she told me. I remember feeling a weight lift. After more than a decade of failing health, she seemed to have found a sense of peace.
The day before her death, as her breathing became more labored, Mom made an announcement: “I have a new leader,” she said.
“Who is that?” I asked.
“Mark. He’s going to take me to the other side.”
She was speaking of my husband, alive and well back home in North Carolina.
“That’s great, Mom, except that I need him here with me,” I replied. “Do you think he can do both?”
“Oh, yes. He’s very capable.”
That evening, Mom was struggling again to breathe. “I’m thinking of the next world,” she said, and of my husband, who would lead her there. The caregiver on duty for the night and I sat at her bedside as Mom’s oxygen level fell from 68 to 63 to 52 and kept dropping until she died the next morning. My mother was not a brave person in the traditional sense of the word. She was afraid of snakes, the subway platform and any hint of pain. But she faced her death, confident that a man who loves her daughter would guide her to whatever lay ahead.
“Do you think it will happen to you?” she asked me at one point about her dreaming life.
“Maybe it’s genetic,” I replied, not knowing, as I do now, that these experiences are part of what may await us all.
Although a dying person tends to spend more and more time asleep or unconscious, there may be a surge of brain activity just before death
By Denyse O’Leary
Wednesday was Ash Wednesday in the Western Catholic tradition. It marks the beginning of Lent, a season of reflection and repentance. A common custom is that, during the service, the priest traces the sign of the cross in ashes on the penitent’s forehead, saying “You are dust and you will return to dust” (Gen 3:19). It’s one of many customs worldwide that offer a sobering reflection on the inevitability of death for all of us — unless, of course, we are transhumanists who genuinely believe that technology can grant us immortality.
What does dying actually feel like?
Most human beings have always believed that the essence of a human being survives the death of the body though the outcome is envisioned in a variety of ways. But, assuming that pain and distress are controlled, what does dying actually feel like? Can science tell us anything about that?
At BBC Science Focus, palliative care doctor Kathryn Mannix offers a few thoughts from long experience, including:
A dying person spends progressively less time awake. What looks like sleep, though, gradually becomes something else: dipping into unconsciousness for increasing periods. On waking, people report having slept peacefully, with no sense of having been unconscious…
As dying progresses the heart beats less strongly, blood pressure falls, skin cools down and nails become dusky. Internal organs function less as blood pressure drops. There may be periods of restlessness or moments of confusion, or just gradually deepening unconsciousness…
Breathing moves from deep to shallow and from fast to slow in repeating cycles; eventually breathing slows and becomes very shallow; there are pauses; and, finally, breathing ceases. A few minutes later, the heart will stop beating as it runs out of oxygen.
Kathryn Mannix, “What does dying feel like? A doctor explains what we know” BBC Science Focus, February 10, 2024
Surge of brain activity just before death
We are also learning that, contrary to what we might have expected, the brain does not necessarily just die down quietly. Researchers have recorded a surge of activity just before death:
To that end, the brain activity of four people who passed away in hospitals while being monitored by an EEG (electrogram) device was studied.
“The data generated, even though it’s only four patients, is massive, so we were able to only report a fraction of the features that it’s actually showing on the data,” Prof. Borjigin said.
At the time of death, brain activity was detected in the TPJ region of the brain — named because it’s the junction between the temporal, parietal and occipital lobes in the back of the brain.
Dan Gray, “Study finds evidence of increased brain activity in people right before they die,” Medical News Today, May 5, 2023. The paper is open access.
In any event, cells deprived of oxygen are doomed. But that does not mean that all of the body’s cells cease to function immediately when a person dies:
The brain and nerve cells require a constant supply of oxygen and will die within a few minutes, once you stop breathing. The next to go will be the heart, followed by the liver, then the kidneys and pancreas, which can last for about an hour. Skin, tendons, heart valves and corneas will still be alive after a day. White blood cells, which are more independent, can keep going for almost three days.
Luis Villazon, “When we die, does our whole body die at the same time? ”BBC Science Focus, nd.
So when a medic declares a person dead, that means that the death process is past the point of no return, not that every cell in the body is dead.
Terminal lucidity — getting in the last word
There are many stories through the ages of people near death suddenly waking up and saying something lucid. Researchers who study the phenomenon call it terminal lucidity. At Psychology Today in 2018, nurse educator Marilyn Mendoza noted regarding research to date::
So far, the response rate to the questionnaire he distributed has been limited. While the results are in no way definitive, out of the 227 dementia patients tracked, approximately 10 percent exhibited terminal lucidity. From his literature review, Nahm has reported that approximately 84 percent of people who experience terminal lucidity will die within a week, with 42 percent dying the same day.
Marilyn Mendoza, “Why Some People Rally for One Last Goodbye Before Death,” Psychology Today, October 10, 2018
As to why it happens, she offers,
There is as yet no logical scientific answer to this medical mystery. There is just not enough information to postulate a definitive mechanism for terminal lucidity. The fact that it occurs in people with different diseases suggests that there may be different processes occurring. Some speculate that this could be a spiritual experience or divine gift. It certainly is a gift for family members attending the death to have one last opportunity to be with their loved one and to say their last goodbyes. Both family members and caregivers who have been witness to this state that they feel changed by the experience.
Mendoza, “One Last Goodbye”
One interesting trend is this: Fifty years ago, slick media commentators expected to report that research into death and dying would explod all those myths about a soul or the hereafter or the human mind. But the opposite has happened. Topics like terminal lucidity and near-death experiences are conventionally researched now. And it’s just as clear now as it was fifty years ago that life is a journey and death is not, itself, the destination; rather, it’s a gateway to one.
– A palliative care specialist’s practical guide to life’s end
Even people who are comfortable discussing death – including the inevitable prospect of their own – might understand little about how it actually tends to unfold unless they’ve experienced it firsthand alongside a loved one. In this brief animation, author Kathryn Mannix, who worked as a palliative care physician for 20 years, offers viewers a sensitive, honest and practical guide to how death tends to progress under normal, or perhaps ideal, circumstances. Pairing her narration with gentle, flowing animations, the UK filmmaker Emily Downe’s short makes a powerful case that there’s deep value in discussing and understanding death well before it touches us.
She’s almost 70 and has struggled to control high cholesterol levels and pre-diabetes for much of her adult life, resisting tempting treats like strawberry shortcake and French fries. But now her appetite is gone, and stage four ovarian cancer is gnawing away at her insides.
She only wants ice cream, preferably chocolate with a cascade of caramel sauce. Her daughter is adamant she shouldn’t have it. “Mom, you know it’s bad for you,” she says. But her mother is dying, and the doctor says it’s essential for her to eat.
Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability.
The goal of nutritional support for individuals in palliative care (when potentially curative treatments have been deemed unsuccessful and have been stopped) is to improve the remaining quality of life. Proper nutrition impacts energy and stamina levels.
According to Courtney Pelitera RD, a registered dietician with Top Nutrition Coaching, cachexia, wasting of the body and loss of muscle and fat are frequently seen towards the end of life. This can lead to impaired mobility, unplanned hospitalizations and increased symptoms.
Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability. Because the gut is not functioning normally and people may be less physically active, several symptoms are often seen in people undergoing cancer treatment, living with cancer or at the end of life, says Pelitera.
These changes impact appetite and ability to tolerate certain types of foods or liquids and may include:
Appetite loss, anorexia
Taste and smell changes
Diarrhea, constipation, nausea, indigestion and heartburn
Inflammation of oral mucosa and mouth sores, dry mouth
Difficulty chewing or swallowing (dysphagia), choking episodes
The Emotional Aspects of Food Refusal and Appetite Loss
According to Pelitera, “Sharing a meal is one of the most common ways to socialize. In most cultures, people use food to celebrate milestones and special occasions. It is also sometimes used for comfort and to cheer people up. When someone is ill, visitors will often bring casseroles or sweets.”
“Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking.”
However, it can be very upsetting when someone you care about is uninterested in eating or refusing previously enjoyed foods. It is painful to see someone lose weight and become weaker, even though it is the disease process and not only the decreased food intake that is causing it.
The inclination to push food and prepare elaborate meals to try and entice the person to eat is counter-productive. The ill person may feel guilty, as if they are letting you down, and might try to eat even though it can cause them physical discomfort. As Pelitera explains, “Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking.”
