All pets go to heaven.

— She helps them do it at home.

Eden Gaines, left, talks with veterinarian Karen Meyers about the decision to euthanize Xochitl, a boxer-Great Dane mix who has cancer.

By

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, which will 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 than two 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.

Complete Article HERE!

What Deathbed Visions Teach Us About Living

— 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.”

A photo illustration of two silhouettes: one person and one dog.
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.

Complete Article HERE!

What Dying Feels Like

— Palliative Care Doctor

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?

Caregiver supporting sick woman with cancer dying in the hospital

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.

There may be a correlation between the surge of activity and near-death experiences, though that wouldn’t account for the NDEs of people who showed no neurological activity.

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.

Complete Article HERE!

Demystifying death

– 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.

End-Of-Life Nutritional Support

— Improving the remaining quality of life is at the heart of proper nutrition in order to support energy and stamina levels

The goal of nutritional support for individuals in palliative care is to improve the remaining quality of life.

By Barbra Williams Cosentino

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.”

Complete Article HERE!

The Palliative Path

— A meditation on dignity and comfort in the last days of a parent’s life

At a certain age, for certain conditions, palliative care can be a better, less painful choice—not just for the patient but also their caregivers.

By Abeer Hoque

In 2020, in the midst of a worldwide pandemic, my 85-year-old father suffered a heart attack in Pittsburgh and was rushed to the hospital.

The stent, a minorly invasive procedure, was the easy part.

But the two days he spent in UMPC’s state-of-the-art ICU were a nightmare. The anesthesia made him groggy and aggressive. The sleep meds made him perversely restless and short of breath. The IV he constantly fiddled with, once even ripping it out, much to our horror.

Instead of restraining him, which I imagine to be a cruel and unusual punishment for an Alzheimer’s patient, the ICU staff let me stay with him overnight (a massive kindness made greater by the strict Covid protocols of that time). This way, I could keep him from wandering, from pulling out the IV, from being confused about where and why and what. Every two minutes—I timed it, and it was comically on the clock—I explained and comforted and explained again. By midnight, I thought I would go mad with worry and exhaustion. By 3 a.m., I was seeing stars, my father and I afloat in an endless hallucinatory universe of the now. By 6 a.m., we were both catatonic.

After he came home, my father was in a bad state. Physically he was fine, if a bit unsteady, but emotionally, he was depressed, anxious, raging, unresponsive. His appetite was out of control and he raided the fridge at all hours. He barely slept, wandering the house like a ghost of himself. It took almost three months for him to return to his ‘normal’—another immense gift from the universe, as medical crises often spell inexorable decline for the elderly.

A year later, the doctors discovered a giant (painless) aneurysm in his stomach, which could rupture and kill him “at any moment”.

Operating would mean a five-inch incision, at least five days in the ICU and up to a year to recover fully (if at all). For someone with dementia, major surgery also seemed a cruel and unusual punishment. From New York to Philadelphia to Pittsburgh, my siblings, my mother and I met over video chat to discuss at length. We made the difficult decision to let the aneurysm be, to keep my father comfortable and at home.

Initially, my mother felt tortured. Were we giving up on my father? Was she abdicating her responsibility?

These are questions that modern medicine is not always fully equipped to answer.

Doctors (especially surgeons) are often focused on finding and fixing the physical problem. But Alzheimer’s is a uniquely mental condition and it forced us to consider my father’s health and well-being on more than just the physical front. We wanted to prioritise his dignity, his comfort, his pain-free state: namely, his overall quality of life.

Days later, the doctors told us that the aneurysm was actually inoperable because of its position in his body. Moreover, there were two rogue blood clots that, if disturbed, could travel to the brain and kill him instantly. Our decision had been the right one, not just mentally but also medically.

Our family made another big decision at this time: we would not take my father to the hospital anymore—instead we would start palliative care.

I have been recommending Atul Gawande’s brilliant book Being Mortal to everyone since I read it five years ago. It lays out the case for palliative medicine (a.k.a. hospice care) in compelling detail. Instead of trying to prolong life, palliative care prioritises a patient’s physical and mental well-being and focuses on pain management. Not only does this kind of care drastically reduce the chances of family members developing major depressive disorder, but the patient outcomes are astonishing:

Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25% longer. If end-of-life discussions were an experimental drug, the FDA would approve it.

Atul Gawande, in his book ‘Being Mortal’

In February 2023, my parents moved to Dhaka after 54 years abroad (in Libya, Nigeria and the States), abandoning the isolating, exorbitant, often neglectful care networks of America for the familial support and affordable at-home caregiving of Bangladesh. We were privileged to have this option, to have extended family so loving and helpful, to have enough money to pay rent and hire multiple caregivers.

For my mother, who had been my father’s full-time caregiver for over a decade, it was a new lease on life, letting her visit childhood friends, walk in Ramna Park every morning, get a full night’s sleep. We were additionally lucky that over 10 months, we did not have to see a doctor because my father’s occasional tummy upsets and falls did not result in serious illness or injury.

In December 2023, my mother left for the US for five weeks to visit my sister and her three children and to hold her newest month-old grandchild (my brother’s first child) in her arms. It would be the first time in more than a decade that she would leave my father for more than a few days, and she agreed to this vacation only because I had taken an extended break from my life in New York to be in Dhaka while she was away.

Three days after she landed in Pennsylvania, my father suffered his first medical crisis in over a year: a distended belly and extreme stomach pain.

I immediately called my cousins who live down the street. Two of them brought over their mother’s doctor, a young generalist who worked in the ICU of the hospital around the corner from us in Bonosri. Seeing my father’s taut and grossly swollen stomach, the doctor advised urgent hospitalisation. Thus started a gruelling, repetitive, exhausting conversation about palliative care, all while my father cried out in pain from the bedroom.

Despite several palliative and hospice centres in Dhaka, the concept seems unknown to many Bangladeshis, perhaps even heartless.

Neither of my cousins could sleep that night after hearing my father’s cries. I explained why we had decided against hospitalisation, against X-rays, ultrasounds and blood tests, against antibiotics and IV-administered fluids. I predicted that the hospital would likely have to restrain or sedate him or both. I said that even if we eased his physical state, mentally he would be traumatised.

This resistance to palliative care is not uniquely Bangladeshi. Families across the world are torn apart because family members have different ideas on how to best take care of a loved one. Too often, no one has asked the patient their preferences about resuscitation, intubation, mechanical ventilation, antibiotics and intravenous feeding. Too often, it’s too late to ask by the time these medical interventions come into play.

The doctor finally offered pain and gastric medicine via intravenous injections. One bruised wrist later, my father was more comfortable. Over the next 24 hours, he had two more injections, but by the third one, the pain meds were no longer working.

At 2 a.m. on a cool Dhaka winter night, we levelled up, the doctor generously taking time off his night shift to come to our house with a nurse and administer an opioid that eased the pain for another day and half.

By Christmas, or Boro Din as they call it in Bangladesh, I had defended palliative care more than half a dozen times to my relatives, each one aghast at how my father could suffer so, without my helping, i.e., hospitalising him.

This then was my struggle: to remember I was not there to fix anything, but to ensure that he remain in familiar surroundings, in his sunny airy bedroom. That he not be in pain.

This too was my struggle: to get my extended family on board with palliative care.

The cousin who came to live with us in America when he was in high school and who idolised my parents. The cousin who asked me to bring my father’s nice shirts and blazers from Pittsburgh so he could wear them. Their sweet wives, my bhabis, and their lively loving children who visited my father almost every day. To hold back my kneejerk reactions:

Are they questioning my family’s judgement? Is this the patriarchy at work? Do they understand that it is no easier for me to see my father in pain?

My challenge was to set my defensiveness aside and try to infuse their love and concern with knowledge and perspective, so they could help me help my father spend his remaining days in comparative ease, rather than more aggressive medical treatment.

My last struggle was the hardest of all: The one that questioned the kind of life my father had been living these last few years.

Nine years after his Alzheimer’s diagnosis, he could not do a single thing that used to bring him pleasure: dressing nicely each morning, making himself breakfast while exclaiming over the newspaper headlines, reading history books and novels, writing fiction in Bangla, teaching geology in English, wandering the Ekushay February book fair, visiting his ancestral home in Barahipur, playing cards and watching action films, making his grandchildren collapse into giggles, walking on the deck at sunset with Amma, holding court with the Bangladeshi community in Pittsburgh, speaking to his two beloved remaining siblings, my Mujib-chacha and Hasina-fupu, delighting my mother with his quick-witted jokes.

If he could make no new memories and the only joys he had were fleeting—the chocolate chip cookies from Shumi’s Hotcakes, my mother’s smiling face, his caregivers’ tender ministrations—were these enough?

Was there some Zen-level lesson here on living in the moment?

And when these brief moments were interleaved with longer troubling periods of confusion, distress, rage and sadness… What then?

What about the endless hours spent restless and awake, his eyes lost and searching?

My father and I had had a fraught relationship my whole life.

Patriarchal and emotionally distant, he threw me out on several occasions, literally and figuratively. I didn’t speak to him for years at a time, and even reconciled, our exchanges were limited to politics, education and writing. He seemed uninterested in anyone’s emotional life, unable to engage in conflict without judgement and anger. His gifts of intellectual brilliance, iron-clad willpower and moon-shot ambitions did not make him an easy father—or easy husband, for that matter.

But now, none of that mattered. The only thing that did was my attempt to attend to him with kindness.

Linking his dementia-fueled rage to his life-long habitual rage would make the already difficult task of caregiving impossible. I had read enough studies that showed that caregivers died earlier because of their stress. It wasn’t hard to see the toll it had taken on my mother over the years. She had been hospitalised for rapid heartbeat issues twice last year and, despite a lifetime of healthy living, had developed high blood pressure to boot.

In his sleep-deprived, pain-addled state, my father didn’t always respond or recognise those around him. But one night, in a moment of lucidity, he reached for my hand and asked urgently, “Are you doing ok?”

“Yes Abbu,” I assured him, “I’m doing fine.”

And then he said—faint, incomplete, clear—“Take… your Amma.”

I said, “Of course I will.”

He was telling me what I’d always known, that despite everything, he had always looked out for my health and self-sufficiency, and more importantly, that looking after my mother was our shared act of service.

If this winter of struggle and sorrow gave my mother more time in the world, then I was ready for it. Would that the path were palliative for us all.

Complete Article HERE!

Solving for X at the End of Life

— In interviews with people who were dying, we learned they wanted to mark their final days with meaningful experiences and leave their affairs in order. It’s time to reset logistics, last days and legacy.

By Thomas Kamber

He died fuller of faith than of fears,
Fuller of resolution than of pains,
Fuller of honour than of days.
Inscription, Westminster Abbey, 1631

Why do we so often die badly? How does it happen that so many of us arrive at the end of life unprepared for the journey? Somehow, we are stumped when it comes to creating a better model of dying. Our unique qualities as individuals are lost in the processes of medical institutions and funeral homes. For those facing our last days, we have a pretty good sense of what’s involved.

A person using a video robot to view various artwork at a museum. Next Avenue
This woman was able to participate in a robot tour of the Whitney Museum by driving a telepresence robot around the museum from her hospice bed in Connecticut.

Twenty years ago, I started a nonprofit organization called Older Adults Technology Services (OATS) based in New York City that helps senior citizens build new models of aging while learning technology skills. We use design thinking methods to create new programs for social impact, using approaches like co-creation, prototyping and customer satisfaction metrics.

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum.

Recently we turned our innovation lens toward what was happening with older people in end-of-life situations to see if we could design new programs to help them. Using a design thinking methodology, we met with people who were dying and asked questions like, “What is a good day like for you?” and “If you could change one thing about your end-of-life process, what would it be?”

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum. Some had been told they had months left, while others were living with just a few weeks in their prognosis. We visited other hospices around the country and spoke with social workers, chaplains, elder law attorneys and service providers.  We read books on death and dying by Caitlin Doughty, Atul Gawande and Richard Rohr. We had weekly review sessions and talked to experts on business planning and branding and customer experience design.

We Are Failing at Dying

Here is what we learned.

We are failing at dying. Instead of a time for growth, deep connection, reflection and deliverance, our ends of life are consumed by petty distractions and institutional imperatives. The dying people we interviewed had not given up on life; rather they were full of desire to mark their final days with meaningful experiences and leave their affairs in order.

Yet almost everyone expressed sadness and frustration that they lacked a path for the right kind of death, the kind of passing that would reflect well the kind of life they had lived and the essence of the person they had become.

People described an entrenched group of institutions, resistant to change and wielding enormous power, which have grown to dominate the last stage of life — hospitals, funeral homes, home care agencies, religious organizations. When asked what they wanted instead people asked for three kinds of help: logistics, last days and legacy.

We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

The Burden of Unmet Tasks

“Do you know someone who can come clean out my attic?” asked one woman in her fifties, fighting cancer and concerned that her overworked and grieving husband was sinking under the weight of daily tasks such as lawn mowing and housework. It was a startling response, in a bedside interview, to the question, “what’s most important to you now?” We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

Logistics, it turns out, are top of mind for people who are dying. One woman spoke of her satisfaction in having arranged her funeral details and even set aside a dress to wear in her coffin. In an echo of Maslow’s famous hierarchy of human needs, the quotidian tasks form the base of the pyramid, and it seems difficult for people to elevate their thinking while still burdened with a laundry list of unmet tasks.

Many people commented on the need for legal help with logistics; writing wills, advance directives, health care proxies and financial plans. For many people, procrastination on legal matters resulted in family conflicts, loss of control over health decisions and anxiety about financial losses.

Unfortunately, once people were already in hospice, it was sometimes too late to interview lawyers and schedule notaries for important documents. Critical decisions about health, finances and death planning were left to caretakers and service providers, leaving the dying individual with little control over final decisions.

Death Needs a Reset

Being able to choose the location, activities and company of one’s last days was a recurrent theme. Despite being just days from passing, people expressed interest in writing articles, visiting museums, doing last trips with family members and exploring culture. My organization was able to arrange a robot tour of the Whitney Museum for one woman, who drove a telepresence robot around the museum from her hospice bed in Connecticut. At the end of the day, she drove the robot to the window and silently watched the sun setting over the river. 

One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path.

Finally, hospice patients were predictably focused on their legacies. We spoke for hours with people about their thoughts on post-death rituals, the value of a personalized funeral and the services that might help them express their individuality after passing. There was a great deal of openness to modern, innovative funeral approaches— “living funerals,” celebratory parties after death and eco-friendly caskets and cremations.

One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path. What’s at stake is no less than our self-determination as free individuals. Like any life transition, death is a chance to explore and express ourselves in our mature stage, when we have perhaps the most important things to say. Modern culture offers endless chances for tailoring this most personal of events to our unique needs, but our social discomfort talking about death blocks us from acting.

Time for Innovative Thinking

We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.

We found some truly innovative models in our research: “death cafes” where people gathered to explore themes of mortality and end-of-life planning; alternative hospices such as the Zen Hospice in California and Regional Hospice in Connecticut; digital death planning apps and sites such as Everplans and Everest Funerals; community learning programs run by the Plaza Jewish Community Chapel; and a national dialogue and events series sponsored by the San Francisco-based nonprofit Reimagine. Unfortunately, these programs only serve a small percentage of those who want them.

Here is a vision for reshaping end-of-life services and systems in accordance with what people asked for in the interviews.

Logistics: We need insurance and financial products that recognize the need for intensive health and personal assistance during the end-of-life period and provide enhanced benefits for people who need them. Government might create tax-free plans for legal fees associated with end-of-life plans, and the service sector should increase programs to ensure that people over the age of 60 have a legal will, advance directive and other necessary basic documents.

Last days: Incubate and accelerate a new service sector focused on proper preparation and programming for end-of-life. As major life transitions go, dying is on a par with getting married or having children, so let’s build an industry of death services to rival wedding planners and baby showers. Bring on the social entrepreneurs!

Legacy: Encourage innovation at end of life. We spoke to several innovators who had to pursue legislative recourse to overturn outdated regulations that restricted new approaches in hospice and funeral care. New York City has over 10,000 nonprofit organizations but only one nonprofit funeral home. We need to open the sector to more innovation and reduce regulatory barriers to innovation.

Fear of death and decline holds a strong sway over our minds as we age, and it’s no wonder that we are reluctant to face it. But the longevity revolution means we are living longer and expecting more from each day of our lives, and technology is adding powerful tools for managing our last days and legacies. We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.

Complete Article HERE!