I am dying from prostate cancer that has spread to my bones.
But it’s comforting to know that I will likely soon die gently because I plan to use a medical aid-in-dying law championed by civil rights icon Dolores Huerta.
Thanks to the California End of Life Option Act, I will soon have the option to take a medication prescribed by my doctor that will allow me to die peacefully.
While I understand why my doctor wanted me to undergo more treatments, at this point in the rapid progression of the disease, the costs outweigh the benefits for me. Doctors should consult with patients about their care, not dictate it. Only I can determine how much suffering I can endure.
I suspect this disparity is because we have unequal access to this end-of-life care option because of healthcare system bias, cultural differences, and/or language barriers. I am a low-income body shop mechanic who does not speak English. My family doesn’t even have money for my burial.
In December 2023, three months after trying to start the conversation about medical aid in dying with my healthcare team and after I had already endured numerous rounds of treatment since my diagnosis in 2018, I told my doctor:
“I don’t want any more treatment, I want you to respect my decision and I want you to help me. I’m asking that you declare me at the end stage because you’re the one who knows the treatment isn’t working for me anymore.”
I repeatedly asked my oncologist to estimate how long I have to live.
She declined to give me a prognosis. I showed my doctors a web page about this end-of-life care option to prompt the conversation with them.
They responded, “No, not yet…Keep taking more chemo.”
‘I Have Options’
I kept telling my doctors: “I have options.”
Why did my doctors not advise me about my healthcare options at the end of life, including my right to decline medical treatment for this incurable illness?
Hospice
For five years, I endured treatments to try to cure the cancer so I could work to provide for my two children and enjoy life.
Not anymore.
Last week [March 10], my doctors finally placed me in hospice care that focuses on alleviating some of the pain.
I am tired. I am weak. I have had a fever and convulsions for days. My frail and thin body can no longer withstand more than just a few steps.
Suffering is like being tortured.
Cancer consumes you little by little.
Unfortunately, the hospice care I am getting does not significantly reduce my suffering, so I will soon get the medication that will relieve me of this pain so I can die in peace.
I have spoken to God and asked Him to forgive my sins throughout my life.
I was out today in the early morning walking with a close friend of 64 years named Shelley Adams. Despite some huge losses over time, she is always overtly positive. I don’t normally like this in a person. I make a rare exception for her. We hike several times a week beside our local creek, now a twisting, flowing stream that rushes over rocks, mint and twigs.
Rainer Maria Rilke was only partially right when he wrote that “life holds you in its hands and will not let you fall,” because both Shelley and I, like all older people, have been dropped. But life also at some point pulls you back to your feet. What do you do in between, during times of loss or general dread? My friend Tom Weston, a Jesuit priest, always reminds me, “We do what’s possible.” I hate that.
Okay, fine: What is possible? The practical, simple and kind. We work, love and help others as best we can, gawk at nature, rest. Is that it? Pretty much.
This is a little disappointing, but age teaches us that kind, simple and practical are enough, even in the face of the worst things we’ve lived through: suicides, mental illness, odious leaders, sudden death. My friend Don was called one day by an aging and suicidal friend. His friend asked, “What is the point of it all?” After a moment, Don replied gently, “Mornings are nice.” And, wildly, it was enough. His friend improved.
I cannot hike the uphill trails here anymore because of my hip, so we do what’s possible: take four 10-minute laps back and forth along the creek. Everything that is true about aging appears to me on these walks.
On our first lap, Shelley and I catch up. We’ve always been talkers, readers, movie lovers. What was true about us at 6 years old is true about us now. We gossip, laugh a lot, quibble. We looked so similar as small kids, with green eyes and white-blonde hair. We still do. We’re built about the same. I’m a bit taller and smaller-boned, but otherwise we could be sisters. And like sisters, we can annoy each other, and weaponize silence. Families, sigh.
I grew up at her house. Her mother was my other mother, who saw how amazing I was on the inside, not just how much better I could be doing. Shelley and I went through childhood and puberty together, played competitive tennis for years as partners and then didn’t see each other much for 40 years. We raised kids, buried parents; sad, scary things have happened to us both, as they have to everyone by a certain age. Now, we’re slower, less busy, a bit goofy.
For instance, this morning, while searching for the word “coaster,” the closest I could come up with was “coffee pad.” She laughs so hard when I say this, she has to cross her legs, and then almost loses her balance.
By the second lap, our bodies have loosened up, and we talk a bit less and look around a lot more, and listen. The creek is the place where the water and the land are in constant conversation. My vision is often blurred by dry eye, but there is a grace to myopia: I’m less fixated.
We walked this morning in raincoats because it was drizzling off and on, even as the sun shone through faintly. In my family, we always announced during a sun shower that it must be a monkey’s birthday somewhere. In Akira Kurosawa’s “Dreams,” a mother tells her child, “The sun is shining through the rain. This is the time when foxes have their weddings.”
Like most old friends, we can bobble along without talking for stretches. I listen for the soft orchestral music of the woods on either side of the path. After scanning the illuminated green scrim of trees ahead and far away, I pull closer in on individual trees, all arms and elbows and long legs. The trees just stand around, as is their wont. The drizzle plays them. What instruments are they? Mostly woodwinds, maybe oboes, some flutier, and then dark, dark trees, like kettle drums, like patches of life.
Because we go back so far, Shelley and I know each other’s souls and shadows, and each other’s major screw-ups, and there is comfort in this. Also, we have made mistakes with each other that have felt like betrayals. This happens in families. We have gotten so mad that we have ditched each other on the trail and shouted to each other’s back, “Don’t you dare walk away from me.” Actually, that was only me. We take breaks, make up.
By the third lap, my hip has begun coughing quietly to get my attention. It would like to go home now. My vision is even more blurry because of the drizzle and thin light, added to the dry eyes. This is part of what it means for me to be alive still, the blinky vision. Paradoxically, I see more. Now, instead of sharp focus, there’s an appreciation of shifts in light that reveal the mutability of the world. The light sometimes changes minute by minute, and with it we perceive changes in the energy around us, above us, inside us. It moves our attention outside our squinty, judgy little selves.
We point out dark-eyed Oregon juncos to each other and finches, the males with their glorious red headdresses and chests, the females in their faded brown bathrobes. We talk about spiritual things and people we hate — as she puts it, “people we’re allergic to, bless their hearts.’” We talk about our scattered minds: This morning, I was struggling to read some tiny print in a book, and, without thinking, I touched the printed page to pinch it out and make it bigger. Eeesh, I thought: Scary! But I was gentle with myself about it.
My hip has really begun to ache by the final lap. We talk and limp along. Easily half of the people in our conversations have passed on, all four parents, both of her younger siblings, dearest friends. We know that death won’t be so hard. We’ve seen many people through the end of life. It’s never dramatic, like Snagglepuss staggering around onstage clutching his throat. It can be rough, and then one slips over gently to whatever awaits. My old pastor told me it is like going to bed on the living room floor and waking up in your own bed.
Age is giving me the two best gifts: softness and illumination. It would have been nice if whoever is in charge of such things doled them out in our younger years, but that’s not how it works. Age ferries them across the water, and they will bring us through whatever comes.
Kevin Heyward poses next to his Austin car coffin that he made at the Coffin Club’s workshop
By Ryland JAMES
It’s a task of grave importance, but there’s nothing to stop New Zealanders having a laugh as they work on DIY caskets in the country’s “coffin clubs”.
Elderly club members meet for cups of tea, a bit of banter, and to literally put the final nail in one-of-a-kind coffins that will carry them to their eternal resting place.
Kevin Heyward plans to be sent off in a box resembling a vintage Austin Healey.
Registration plate: DEAD1A.
Kevin Heyward’s Austin car coffin is fully equipped with a mock steering wheel, windscreen, rubber wheels, wooden mudguards, painted-on side doors, and wing mirrors
“My daughter came up with the idea,” the 79-year-old car enthusiast said with a grin, brushing sawdust off his overalls.
It’s fully equipped with a mock steering wheel, windscreen, rubber wheels with metal hub caps, wooden mudguards, a bonnet, painted-on side doors, and wing mirrors.
“The trickiest part was getting the mudguards lined up because of their curve,” Heyward told AFP at the workshop of the Hawke’s Bay Coffin Club in Hastings.
The hefty casket, which can be carried with six wooden handles, even has working headlights. The batteries, naturally, are currently dead.
“It weighs quite a bit and I’m a big man,” he said.
“I have said to my six grandsons they had better start weight-training, because they will be carrying it one day,” Heyward chuckled.
“There is a bit of humour in this car.”
The club is one of four that have sprung up around New Zealand, with the first opening in 2010 in Rotorua on the country’s North Island.
Some clubs boast as many as 800 people on their books, though one admitted “not all of them are above ground”.
At the Hastings club, Jim Thorne, a spritely 75-year-old motorcycle fan, used his skills as a cabinet maker to build a casket painted with a motorbike track. It’s stored in his garage, alongside a collection of motorbikes.
Thorne said most friends “are a little aghast and say ‘why are you doing that?'” when they hear about his coffin-making hobby.
“Apart from the fact that I like the look of mine, it’s my input into my final days.”
– ‘Dying to get a coffin?’ –
“There is a certain mindset in some people that this is almost a taboo subject that they find very, very difficult to talk about,” Thorne said.
“They tend to overcome it. At the end of the day, it’s a reality of life, unfortunately.”
Elderly club members meet for cups of tea, a bit of banter, and to literally put the final nail in one-of-a-kind coffins
He breaks the ice with newcomers by asking: “Are you dying to get a coffin?”
But the club’s atmosphere is far from morbid.
Banter flows during the morning tea break as members chat over scones and hot drinks.
“We’re a bit unique, but we are happy. There are always lots of jokes,” said club secretary Helen Bromley.
Most members are seniors. The club provides a space to open up about death and dying during weekly meetups.
“I think everybody here has accepted that they are going to die, whether they’re decorating their coffin or helping others with theirs,” Bromley said.
“We’re a club that tries to empower people to plan their coffin, to plan what happens if they get sick.”
She said some members want to spare relatives the burden of meeting rising funeral costs. The club will also build and decorate coffins for grieving families.
Coffin Club organiser Helen Bromley works on the lining of a coffin
On average, a funeral in New Zealand costs around NZ$10,000 (US$6,200), according to the national funeral directors association.
Coffin prices range from NZ$1,200 to NZ$4,000.
– ‘Remember Me’ –
For a NZ$30 membership, the Hastings club gives each new member a pressed-wood coffin in one of three designs, ready to be decorated.
The coffins come in four sizes, each costing around NZ$700, extra for paint and a cloth lining.
During a tea break, Bromley announced that a member suffering from cancer was in intensive care after a fall. Her brother had asked the club to finish her coffin as a priority.
The club also builds ash boxes, which they sell to the local crematorium, and small coffins for infants, which they give away.
“The midwives and nurses at Hastings hospital have asked us to not ever, ever stop making the little coffins for them,” Bromley said.
“We donate to whoever. If there’s a miscarriage at home and they want a coffin, we donate.”
Members help knit blankets, teddy bears, pillows and hearts to go in the infants’ coffins.
Committee member Christina Ellison, 75, lost an infant daughter in 1968 and said she was comforted to know the club helps other families grieving the loss of a child.
“The little baby coffins are so beautiful and done with so much care. The knitting that the ladies do is incredible,” she said.
Ellison is moving away soon and plans to take her coffin, which has been painted a blue-grey colour called “Remember Me”.
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.
— Then I talked to some end-of-life experts. Here’s what I found out.
By By Shaina Feinberg and Julia Rothman
Recently, I had the following conversation with my 82-year-old mother, Mary:
Me: Are you prepared to die?
My mom: Not really. But I am prepared with my paperwork.
You might be wondering why I was asking my mom about her end-of-life preparedness. Well, when my dad, Paul, died suddenly a few years ago, we were completely unprepared.
“Dad and I never talked about what he wanted for his funeral,” my mom said. “He was 74 when he died, and he was in pretty good shape.”
On top of everything she had to do when he died, like planning the funeral, there was also the stress of finances and paperwork. “We had a joint checking account, but it didn’t have a lot of money. Our other bank account had more money, but was only in his name. I had to get that sorted out, which took ages.”
The most helpful advice my mom got when my dad died? “My best friend, Fran, told me, ‘Get a lot of death certificates because you’re going to have to send them to people and sometimes they don’t want a Xerox, they want the real thing.’ I got 15 death certificates from the funeral parlor.”
Preparing to die is complicated. How’s that for an understatement? You have to consider the emotional, spiritual and financial aspects. We talked to three end-of-life experts who unpacked how to make this extensive undertaking slightly more manageable.
According to a survey by Ethos, fewer than half of Americans have discussed their end-of-life plans with loved ones. Yet having these conversations is important, said Sarah Chavez, executive director of the nonprofit the Order of the Good Death, which provides resources to learn about and plan for death.
“These talks can be awkward,” Ms. Chavez said, “but by planning and talking about these things, it’s such a gift for the family that’s left behind.”
While you’re thinking about what to do with your body, you’ll also want to consider what to do with your stuff. “At a baseline, everybody should have a couple documents that are in effect while you’re alive,” said Michael Pevney, an estate planning lawyer with a practice in California. (He also makes videos about estate planning on TikTok.)
No matter what you decide to do with your body or your stuff, you will need someone to carry out your requests.
If you’re unwilling to ask your loved ones about their death preparations, there are other ways to broach the subject. “The easiest way is to open the family photo album and start having conversations about the people in the pictures,” said Joél Simone Maldonado, a funeral director and death educator. “The conversation always turns to what people did or didn’t like about a funeral or grieving process.” Mrs. Maldonado suggests using those conversations as a springboard to ask questions about what people’s end-of-life hopes are. And take notes.
The only upside to being so unprepared for my dad’s death is that now my mom is super prepared. “I have several folders in a cabinet that have all the things you should do when I die,” she said. “I’ve listed you as power of attorney, so you can write a check for the funeral. I’ve paid for my gravesite already. I’ll be next to Dad, under the same gravestone.”
When I asked my mom how she feels looking at the empty side of the gravestone, she said: “There’s my side. I have a place! Oh, and remember,” she added, “I’ve always wanted a mariachi band at my funeral.” Noted.
— 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.
Sandra Bagwell of Mission, Texas, holding the remains of her son, Ryan, who died in 2022. “Ryan was poisoned,” she said.
Grieving families want official records and popular discourse to move away from reflexive use of “overdose,” which they believe blames victims for their deaths.
The death certificate for Ryan Bagwell, a 19-year-old from Mission, Texas, states that he died from a fentanyl overdose.
His mother, Sandra Bagwell, says that is wrong.
On an April night in 2022, he swallowed one pill from a bottle of Percocet, a prescription painkiller that he and a friend bought earlier that day at a Mexican pharmacy just over the border. The next morning, his mother found him dead in his bedroom.
A federal law enforcement lab found that none of the pills from the bottle tested positive for Percocet. But they all tested positive for lethal quantities of fentanyl.
“Ryan was poisoned,” Mrs. Bagwell, an elementary-school reading specialist, said.
As millions of fentanyl-tainted pills inundate the United States masquerading as common medications, grief-scarred families have been pressing for a change in the language used to describe drug deaths. They want public health leaders, prosecutors and politicians to use “poisoning” instead of “overdose.” In their view, “overdose” suggests that their loved ones were addicted and responsible for their own deaths, whereas “poisoning” shows they were victims.
“If I tell someone that my child overdosed, they assume he was a junkie strung out on drugs,” said Stefanie Turner, a co-founder of Texas Against Fentanyl, a nonprofit organization that successfully lobbied Gov. Greg Abbott to authorize statewide awareness campaigns about so-called fentanyl poisoning.
“If I tell you my child was poisoned by fentanyl, you’re like, ‘What happened?’” she continued. “It keeps the door open. But ‘overdose’ is a closed door.”
For decades, “overdose” has been used by federal, state and local health and law enforcement agencies to record drug fatalities. It has permeated the vocabulary of news reports and even popular culture. But over the last two years, family groups have challenged its reflexive use.
They are having some success. In September, Texas began requiring death certificates to say “poisoning” or “toxicity” rather than “overdose” if fentanyl was the leading cause. Legislation has been introduced in Ohio and Illinois for a similar change. A proposed Tennessee bill says that if fentanyl is implicated in a death, the cause “must be listed as accidental fentanyl poisoning,” not overdose.
Meetings with family groups helped persuade Anne Milgram, the administrator of the Drug Enforcement Administration, which seized more than 78 million fake pills in 2023, to routinely use “fentanyl poisoning” in interviews and at congressional hearings.
Ryan died after swallowing one pill from a bottle of what he believed to be Percocet, a prescription painkiller.Ryan Bagwell left behind his dog, Macy.
In a hearing last spring, Representative Mike Garcia, Republican of California, commended Ms. Milgram’s word choice, saying, “You’ve done an excellent job of calling these ‘poisonings.’ These are not overdoses. The victims don’t know they’re taking fentanyl in many cases. They think they’re taking Xanax, Vicodin, OxyContin.”
Last year, efforts to describe fentanyl-related deaths as poisonings began emerging in bills and resolutions in several states, including Louisiana, New Jersey, Ohio, Texas and Virginia, according to the National Conference on State Legislatures. Typically, these bills establish “Fentanyl Poisoning Awareness” weeks or months as public education initiatives.
“Language is really important because it shapes policy and other responses,” said Leo Beletsky, an expert on drug policy enforcement at Northeastern University School of Law. In the increasingly politicized realm of public health, word choice has become imbued with ever greater messaging power. During the pandemic, for example, the label “anti-vaxxer” fell into disrepute and was replaced by the more inclusive “vaccine-hesitant.”
Addiction is an area undergoing convulsive language change, and words like “alcoholic” and “addict” are now often seen as reductive and stigmatizing. Research shows that terms like “substance abuser” can even influence the behavior of doctors and other health care workers toward patients.
The word “poison” has emotional force, carrying reverberations from the Bible and classic fairy tales. “‘Poisoning’ feeds into that victim-villain narrative that some people are looking for,” said Sheila P. Vakharia, a senior researcher at the Drug Policy Alliance, an advocacy group.
But while “poisoning” offers many families a buffer from stigma, others whose loved ones died from taking illegal street drugs find it problematic. Using “poisoning” to distinguish certain deaths while letting others be labeled “overdose” creates a judgmental hierarchy of drug-related fatalities, they say.
Fay Martin of Corpus Christi, Texas. Her son Ryan died in 2021. “When my son died, I felt that stigma from people, that there was personal responsibility involved because he had been using illicit drugs,” she said.
Fay Martin said her son, Ryan, a commercial electrician, was prescribed opioid painkillers for a work injury. When he grew dependent on them, a doctor cut off his prescription. Ryan turned to heroin. Eventually, he went into treatment and stayed sober for a time. But, ashamed of his history of addiction, he kept to himself and gradually began to use drugs again. Believing that he was buying Xanax, he died from taking a fentanyl-tainted pill in 2021, the day after his 29th birthday.
Although he, like thousands of victims, died from a counterfeit pill, his mourning mother feels as if others look at her askance.
“When my son died, I felt that stigma from people, that there was personal responsibility involved because he had been using illicit drugs,” said Ms. Martin, from Corpus Christi, Texas. “But he didn’t get what he bargained for. He didn’t ask for the amount of fentanyl that was in his system. He wasn’t trying to die. He was trying to get high.”
To a growing number of prosecutors, if someone was poisoned by fentanyl, then the person who sold the drug was a poisoner — someone who knew or should have known that fentanyl could be lethal. More states are passing fentanyl homicide laws.
Some people note that the idea of a poisoner-villain doesn’t account for the complications of drug use. “That’s a little too simplified, because a lot of people who sell substances or share them with friends are also in the throes of a substance use disorder,” said Rachael Cooper, who directs an anti-stigma initiative at Shatterproof, an advocacy group.
People who sell or share drugs are usually many steps removed from those who mixed the batches. They would likely be unaware that their drugs contained deadly quantities of fentanyl, she said.
“In a nonpoliticized world, ‘poisoning’ would be accurate, but the way it’s being used now, it is reframing what is likely an accidental event and reimagines it as an intentional crime,” said Mr. Beletsky, who directs Northeastern’s Changing the Narrative project, which examines addiction stigma.
In toxicology and medicine, “overdose” and “poison” have value-neutral definitions, said Kaitlyn Brown, the clinical managing director of America’s Poison Centers, which represents and collects data from 55 centers nationwide.
“But the public is going to understand terminology differently than people who are immersed in the field, so I think there are important distinctions and nuances that the public can miss,” she said.
“Overdose” describes a greater dose of a substance than was considered safe, Dr. Brown explained. The effect may be harmful (heroin) or not (ibuprofen).
“Poisoning” means that harm indeed occurred. But it can be a poisoning from countless substances, including lead, alcohol and food, as well as fentanyl.
Both terms are used whether an event results in survival or death.
Ryan Paul Malcolm went into treatment for addiction, but when he started using again, he kept to himself. Believing he was buying Xanax, he died from fentanyl in a tainted pill in 2021.Ryan’s urn in Ms. Martin’s home. He was an avid Denver Broncos fan.
Until about 15 years ago, the Centers for Disease Control and Prevention, an esteemed source of data on national drug deaths, often used both terms interchangeably. A C.D.C. report detailing rising drug-related deaths in 2006 was titled “Unintentional Drug Poisoning in the United States.” It also referred to “unintentional drug overdose deaths.”
To streamline the growing drug fatality data from federal and state agencies, the C.D.C. shifted exclusively to “overdose.” (It now also collects statistics on reported nonfatal overdoses.) The C.D.C.’s Division of Overdose Prevention notes that “overdose” refers just to drugs, while “poisoning” refers to other substances, such as cleaning products.
When asked what unbiased word or phrase might best characterize drug deaths, experts in drug policy and treatment struggled.
Some preferred “overdose,” because it is entrenched in data reporting. Others use “accidental overdose” to underscore lack of intention. (Most overdoses are, in fact, accidental.) News outlets occasionally use both, reporting that a drug overdose took place due to fentanyl poisoning.
Addiction medicine experts note that because most of the street drug supply is now adulterated, “poisoning” is, indeed, the most straightforward, accurate term. Patients who buy cocaine and methamphetamine die because of fentanyl in the product, they note. Those addicted to fentanyl succumb from bags that have more toxic mixtures than they had anticipated.
Ms. Martin, whose son was killed by fentanyl, bitterly agrees. “He was poisoned,” she said. “He got the death penalty and his family got a life sentence.”
