— 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.
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.
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↩!
Message From A Death Doula
— Everyone Needs A Death Plan (Not Just A Will)
By Hannah Frye
Death is a taboo subject in American culture. So much so that, by the time someone close to you passes, you may not have any idea how they want their affairs handled.
But according to death doula Alua Arthur, getting an “end-of-life plan” in place can make death easier to think and talk about at any age. And this plan goes far deeper than the financial and logistical items covered in a will.
Here’s how Arthur recommends making your end-of-life plan and the benefits it can bring for a well-lived life.
What is an end-of-life plan?
Arthur thinks everybody should have an-end-of-life plan. While the exact contents will be unique to each person, here are some items she recommends including:
- Your end-of-life care: When you’re nearing the end, what kind of environment do you want to be in? Where would you like to be? What type of food do you want to eat? How do you want to feel? This will help your loved ones make the best decisions for you if you’re physically unable to.
- Your body & funeral service: What do you want done with your remains? Do you want a funeral? What does it look like? Any places you’d prefer not to have it? If you don’t know your options, consider looking into it. There are so many innovative and beautiful ways to handle remains you probably haven’t heard of yet.
- Your possessions & financial affairs: This tends to be covered in a will, but can be included in your end-of-life plan as well.
- Your pets & non-relative dependents: Are there any living beings you take care of that you want to pass on information about but may not be included in your will? If so, add a plan for them in this document. Consider pets here if you have any.
Now, it’s important to remember that these end-of-life plans are meant to change and evolve with you.
If you learn about a new burial service that interests you, add it to the document. If you went to a funeral and saw something you wouldn’t want for yourself, put it in your document. This way, when you do eventually pass, your loved ones will know it’s up-to-date with your honest wishes.
Why are end-of-life plans important?
For those who prefer to shy away from discussions about death, don’t worry—you’re not alone. But here are a few reasons that making an end-of-life plan and talking more openly about death can actually help us live healthier lives:
1. Too often, we see death as “a failure”
Shoshana Ungerleider, M.D. has a unique perspective on death as an internal medicine physician and the founder of End Well–a nonprofit on a mission to change how the world thinks about the end of life.
Ungerleider says some of the strong distaste toward the topic stems from how Western medicine views death in a hospital setting. “It’s partly because we as doctors see death very, very often as a failure. And we try to do everything we can to avoid failure in medicine,” she explains.
But in the end, she notes, “Death keeps us awake to our lives.” By pushing thoughts of death away, we can actually increase the power they have over us. Making an end-of-life plan is a way to accept death for what it is and take away some of the stigma that surrounds it.
2. Speaking about it can help with death-related anxiety
On an individual level, death can be scary and anxiety-inducing to think about. The unfortunate truth is that we don’t control how we pass or when. But, what you can control (at least a little bit) is how your death is handled, hence the freeing effect of the end-of-life plan.
Knowing this part of the equation is sorted can actually bring an element of known to the unknown, potentially easing death-related anxiety.
3. A plan can help support your loved ones when the time comes
Having these big questions answered ahead of your death is a service to your loved ones who will care for you in your final days. By taking some of the work off your loved ones’s plate through pre-planning, you’ll help them grieve your passing with just a bit less stress related to logistics. Think of it as paying it forward to those who will care for you during this time.
Though it may not be accessible for everyone, working with a death doula could also prove helpful for you and your loved ones (and you can even request that in your end-of-life plan).
4. Acknowledging death can make you more present
Your considerations around death don’t need to stop once you wrap up your end-of-year plan. Instead, Arthur strongly recommends that everyone start talking about death more often. This doesn’t need to involve serious sit-down conversations. In fact, sometimes easing into it with casual topics can take away the initial shock and overwhelm.
Having more casual conversations around death can improve your quality of life and presence. Ungerleider notes that her colleague Lucy Kalanithi, M.D., often says that living and dying aren’t separate things. We’re doing both at the same time. This perspective can make death a bit less scary and unfamiliar since it reminds us that while we are living every day, we are dying every day, too.
Death keeps us awake to our lives
Making an end-of-life plan probably won’t make you completely fearless when it comes to death. But there’s a chance that it can ease your anxiety around it a bit, as well as provide support to your loved ones.
5. Don’t be afraid to ask for help
If you feel strong anxiety or fear when you think or speak about death, consider reaching out to a therapist for help. They can guide you through difficult emotions that come up and process any potential trauma that could be impacting your fear of death.
The takeaway
Death doula Alua Arthur recommends making an end-of-life plan that includes preferences related to remains, funeral services, how you’ll be cared for in your final days, and other important considerations that may not be covered in a will. If you find the topic of death uncomfortable to talk about, you’re not alone. However, getting familiar with your wishes and desires may benefit your mental health and presence, and help those around you in the long run.
Complete Article ↪HERE↩!
It’s good to remember
— We are all on borrowed time
By Anne Lamott
Getting older is almost like changing species, from cute middle-aged, white-tailed deer, to yak. We are both grass eaters, but that’s about the only similarity. At the Safeway sushi bar during lunchtime, I look at the teenage girls in their crop tops with their stupid flat tummies and I feel bad about what lies beneath my big, forgiving shirts but — and this is one of the blessings of aging — not for long. Aging has brought a modicum of self-compassion, and acceptance of what my husband and I call “the Sitch”: the bodily and cognitive decline that we all face sooner or later. Still, at Safeway, I can’t help but avert my eyes. Why push my luck?
Twenty years ago, when I turned 50, I showed the dark age spots on my arms and the backs of my hands to my wonderful dermatologist.
“They used to call these liver spots,” I said, laughing.
There was silence. “They still call them liver spots,” he replied.
My mother died of Alzheimer’s disease when I was 50; my father had died of brain cancer 25 years before, so I have always been a bit more tense than the average bear about increasing holes in my memory, and more egregious moments of dither. I thought of my 50s as late middle age.
At 60, I tried to get this same dermatologist to authorize surgery to remove the pile of skin of my upper eyelid that gathered like a broken Roman shade at the eyelash line. “Look,” I said, “the eyelid has consumed my eyeball. I will not be able to see soon.”
I pulled out an inch of skin to demonstrate my infirmity.
He pulled out three inches of his own. “Ticktock,” he said. And he was right. All things skin had gone to hell, from the crepe of my forearms to lots of new precancerous lesions that he routinely froze off or biopsied, once making me use a horrible burning cream all over my face that turned me into Peeling Tomato Girl.
So many indignities are involved in aging, and yet so many graces, too. The perfectionism that had run me ragged and has kept me scared and wired my whole life has abated. The idea of perfectionism at 60 is comical when, like me, you’ve worn non-matching black flats out on stage. In my experience, most of us age away from brain and ambition toward heart and soul, and we bathe in relief that things are not worse. When I was younger, I was fixated on looking good and impressing people and being so big in the world. By 60, I didn’t care nearly as much what people thought of me, mostly.
And anyway, you know by 60 that people are rarely thinking of you. They are thinking about their own finances, family problems and upper arms.
I have no idea of the process that released some of that clench and self-consciousness, except that by a certain age some people beloved to me had died. And then you seriously get real about how short and precious life is. You have bigger fish to fry than your saggy butt. Also, what more can you lose, and what more can people do to you that age has not already done? You thought you could physically do this or that — i.e., lift the dog into the back seat — but two weeks later your back is still complaining. You thought that your mind was thrilling to others, but it turns out that not everyone noticed, and now they’re just worried because your shoes don’t match.
Anyway, as my dermatologist hinted, the tock did tick, and one day he was gone. He retired. Then last year, I heard he died.
>Which brings us to death, deathly old death. At a few months shy of 70, with eyeballs squinting through the folds, I now face the possibility that I might die someday. My dad said after his cancer diagnosis that we are all on borrowed time, and it is good to be reminded of this now and again. It’s a great line, and the third-most-popular conversation we oldies have with each other, after the decline of our bodies and the latest senior moments: how many memorial services we go to these days.
Some weeks, it feels as though there is a sniper in the trees, picking off people we have loved for years. It breaks your heart, but as Carly Simon sang, there is more room in a broken heart. My heart is the roomiest it has ever been.
I do live in my heart more, which is hard in its own ways, but the blessing is that the yammer in my head is quieter, the endless questioning: What am I supposed to be doing? Is this the right thing? What do you think of that? What does he think of that?
My parents and the culture told me that I would be happier if I did a certain thing, or stopped doing that, or tried harder and did better. But as my great friend Father Terry Richey said, it’s not about trying harder; it’s about resisting less. This is right up aging’s alley. Some days are sweet, some are just too long.
A lot of us thought when we were younger that we might want to stretch ourselves into other areas, master new realms. Now, I know better. I’m happy with the little nesty areas that are mine. For some reason, I love my softer, welcoming tummy. I laugh gently more often at darling confused me’s spaced-outed ness, although I’m often glad no one was around to witness my lapses.
Especially my son, who frequently and jovially brings up APlaceForMom.com. He’ll say, “I found you a really nice place nearby, where they’ll let you have a little dog!” Recently, I was graciously driving him and his teenage son somewhere and made a tiny driving mistake hardly worth mentioning — I did not hit anyone, nor did I leave the filling station with the nozzle still in the gas tank — and he said to his boy just loud enough so that I could hear, “I’m glad we live so close to town, so it won’t be as hard for her when we have to take away her keys.”
I roared with laughter, and with love, and with an ache in my heart for something I can’t name.
Complete Article ↪HERE↩!
Can magic mushrooms help patients dying in hospice care?
— Dana-Farber researchers want to find out.
Sixty years after Harvard fired Timothy Leary over his experiments with psychedelic drugs, a hospital affiliated with the university has reopened the door on such research by testing whether hallucinogenic mushrooms can help dying patients face death.
The small trial by researchers at Dana-Farber Cancer Institute’s Psychedelic-Assisted Therapy program is the first to test synthetic psilocybin — the active ingredient in so-called magic mushrooms — in patients in hospice care, according to experts. The patients have cancer, heart disease, and other terminal illnesses and six months or less to live.
The pilot study, which combines a single dose of the psychedelic drug with talk therapy, began in 2022 with the approval of the Food and Drug Administration, and has so far provided psilocybin to eight patients, six of whom have since died. The trial, which is expected to be completed next year after two more patients receive doses, is gauging how well dying patients tolerate the drug and whether it eases their “psychological and existential distress.”
It is only the second study of psychedelics at a Harvard-affiliated institution since the school fired Leary as a psychology lecturer in 1963 for unethical scientific practices, according to researchers. McLean Hospital, a psychiatric teaching hospital of Harvard Medical School, began testing another psychedelic, MDMA, or ecstasy, on cancer patients with anxiety in 2006. But controversy derailed the study, which ended without publication of findings.
Dr. Yvan Beaussant, a palliative care physician at Dana-Farber who is leading the new trial, said he hopes it shows whether psilocybin — used for centuries by the indigenous peoples of Mexico and Central America — along with talk therapy can relieve “demoralization syndrome,” a clinical term for the hopelessness and meaninglessness often experienced by hospice patients.
“These people are facing the most challenging phase of life, dying,” said Beaussant. The eight psilocybin recipients reported varying reactions to the drug, he said, but many later felt a renewed sense of purpose and deeper connections to loved ones. To confirm those benefits, Beaussant said he hopes to launch a larger trial.
Psilocybin, like LSD and other psychedelics, is illegal to buy, possess, or distribute outside of a clinical trial; in 1970 the Nixon administration placed it on the federal government’s list of Schedule One substances, on par with heroin.
But over the past 15 years or so, researchers have tested psilocybin’s potential therapeutic benefits, particularly for people with severe depression and anxiety. Some experts say a growing body of evidence shows that under the right circumstances, psilocybin can improve the mood of patients much faster than traditional psychiatric drugs or talk therapy.
Dr. Roxanne Sholevar, a Dana-Farber psychiatrist and fellow investigator in the psilocybin trial, said she was profoundly moved by the experiences of two terminally ill patients whom she counseled and stayed with during mind-altering trips.
One was a 47-year-old woman who had withdrawn emotionally from her two teenaged children while facing death from pulmonary fibrosis, a progressive lung disease. After taking the drug, the woman reported a mystical experience during which she came upon a primordial river where life began, Sholevar said.
She told Sholevar afterward that she realized that all living things had come from the river, and, like them, she would return to it when she died. That helped allay her depression and anxiety and led her to leave a videotaped message to her children saying she would always be with them.
The other patient, an 81-year-old man who was a devout Catholic, felt life was meaningless because of his impending death, and the death of his wife several years earlier. The man, who also had pulmonary fibrosis, took the capsule containing psilocybin and found himself transported to a dark cathedral where he encountered an “ominous presence” that scared him, Sholevar said.
The researchers summoned a hospice chaplain to comfort him, and the man’s agitation faded. He later told Sholevar that he realized that the purpose of his remaining days was to receive and share God’s love.
“These shifts that I’m describing are the type of things that take years of psychotherapy,” said Sholevar. “I am stunned and reverent and just deeply curious about what we are seeing here and how we can develop this to further enhance its safety and rigor.”
Sholevar and Beaussant said the study could also have a side benefit: repairing the reputation of Timothy Leary.
Leary caused a furor as a lecturer in clinical psychology at Harvard in the early 1960s when he was studying psilocybin, which was legal at the time. Faculty members and administrators complained that he was giving hallucinogens to students and sometimes taking the substances with people he was studying. Leary contended that psychedelic drugs, including LSD, could transform personality and expand human consciousness.
After his firing, Leary went on to urge young people to “turn on, tune in, drop out,” becoming an oracle to hippies and a publicity-seeking crackpot in the eyes of critics. President Richard Nixon allegedly described him as “the most dangerous man in America.”
Still, the psychologist helped to pioneer the importance of “set” ― mindset — and “setting” in the safe use of psychedelic drugs, said Beaussant and Sholevar. That insight is crucial to the team of researchers who guide terminally ill patients through mind-altering trips.
All the participants are in home hospice care provided by Care Dimensions, a hospice provider in Massachusetts. The patients must undergo two counseling sessions at home with a team of two therapists who prepare them to take psilocybin and discuss what they hope to get out of it. Patients are advised to “trust, let go, and be open” to the experience “even if it’s intense or uncomfortable,” Beaussant said.
“People might have blissful experiences,” he said, but others have “very challenging” trips. “Sometimes what might come up is a sense of what you’ve lost, past trauma, painful memories,” he explained. “The idea is not to avoid that.”
Patients undergo two more therapy sessions at home after using the drug to discuss how the experience affected them and how that might change how they live the rest of their lives.
The setting for the trips is the 18-bed Care Dimensions Hospice House, located on 12 wooded acres in Lincoln. Patients typically sit on a recliner or lie in a bed in a room with a patio and a view of landscaped gardens. They wear eye masks to focus their attention inward. Donning headphones, they listen to soothing music on a playlist synched to the onset, peak, and fading effects of the psychedelic experience, which typically lasts about six hours.
At least one researcher stays by the patients’ side, checking their heart rate and blood pressure, both of which typically rise modestly under the influence of psilocybin. It’s critical that patients feel safe.
“The idea of set and setting — we know these factors are really important in shaping the nature of the experience and its potential therapeutic value,” Beaussant said. “That’s work Timothy Leary introduced.”
The notion of rehabilitating Leary’s reputation may seem improbable. But so is the surging interest in the potential benefits of hallucinogens to treat a variety of maladies, from depression to post-traumatic stress disorder to obsessive compulsive disorder — even to irritable bowel syndrome.
“We call it the psychedelic renaissance,” said Rick Doblin, a psychedelic drug activist and founder of the Multidisciplinary Association for Psychedelic Studies, who lives in Belmont. His organization hopes to win FDA approval in mid-2024 of MDMA as part of a treatment for post-traumatic stress disorder.
In recent years, the country’s top medical schools have raced to set up psychedelic research centers, and investors have funneled millions of dollars into start-ups exploring the therapeutic potential of such compounds.
Prominent medical schools supporting psychedelic research include Johns Hopkins, NYU and UCLA.
Massachusetts General Hospital, another Harvard-affiliated teaching hospital, established the Center for the Neuroscience of Psychedelics in 2021 to study the substances. It is planning trials of psychedelics for maladies ranging from rumination to fibromyalgia but hasn’t started testing the compounds yet.
Michael Pollan, author of the best-selling 2018 book “How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence,” was startled to hear about the Dana-Farber study.
“That’s a big deal because of Harvard’s history with psychedelics and the institutional embarrassment over the Timothy Leary episode,” said Pollan, who teaches creative writing at Harvard but is on leave this semester. “I would have thought they’d be the last university in America to venture back into the water.”
Pollan was not surprised, however, by the scientific interest in psychedelics to treat mental disorders.
“The mental health care system is broken,” he said, and clinicians are “desperate for new tools.”
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A Hospice Nurse on Embracing the Grace of Dying
By David Marchese
A decade ago, Hadley Vlahos was lost. She was a young single mother, searching for meaning and struggling to make ends meet while she navigated nursing school. After earning her degree, working in immediate care, she made the switch to hospice nursing and changed the path of her life. Vlahos, who is 31, found herself drawn to the uncanny, intense and often unexplainable emotional, physical and intellectual gray zones that come along with caring for those at the end of their lives, areas of uncertainty that she calls “the in-between.” That’s also the title of her first book, which was published this summer. “The In-Between: Unforgettable Encounters During Life’s Final Moments” is structured around her experiences — tragic, graceful, earthy and, at times, apparently supernatural — with 11 of her hospice patients, as well as her mother-in-law, who was also dying. The book has so far spent 13 weeks on the New York Times best-seller list. “It’s all been very surprising,” says Vlahos, who despite her newfound success as an author and her two-million-plus followers on social media, still works as a hospice nurse outside New Orleans. “But I think that people are seeing their loved ones in these stories.”
What should more people know about death? I think they should know what they want. I’ve been in more situations than you could imagine where people just don’t know. Do they want to be in a nursing home at the end or at home? Organ donation? Do you want to be buried or cremated? The issue is a little deeper here: Someone gets diagnosed with a terminal illness, and we have a culture where you have to “fight.” That’s the terminology we use: “Fight against it.” So the family won’t say, “Do you want to be buried or cremated?” because those are not fighting words. I have had situations where someone has had terminal cancer for three years, and they die, and I say: “Do they want to be buried or cremated? Because I’ve told the funeral home I’d call.” And the family goes, “I don’t know what they wanted.” I’m like, We’ve known about this for three years! But no one wants to say: “You are going to die. What do you want us to do?” It’s against that culture of “You’re going to beat this.”
Is it hard to let go of other people’s sadness and grief at the end of a day at work? Yeah. There’s this moment, especially when I’ve taken care of someone for a while, where I’ll walk outside and I’ll go fill up my gas tank and it’s like: Wow, all these other people have no idea that we just lost someone great. The world lost somebody great, and they’re getting a sandwich. It is this strange feeling. I take some time, and mentally I say: “Thank you for allowing me to take care of you. I really enjoyed taking care of you.” Because I think that they can hear me.
The idea in your book of “the in-between” is applied so starkly: It’s the time in a person’s life when they’re alive, but death is right there. But we’re all living in the in-between every single moment of our lives. We are.
So how might people be able to hold on to appreciation for that reality, even if we’re not medically near the end? It’s hard. I think it’s important to remind ourselves of it. It’s like, you read a book and you highlight it, but you have to pick it back up. You have to keep reading it. You have to. Until it really becomes a habit to think about it and acknowledge it.
I was reading these articles recently about how scientists are pursuing breakthroughs that could extend the human life span to one hundred twenty.1
1
Examples of which could include devising drug cocktails that get rid of senescent cells and filtering old blood to remove molecules that inhibit healing.
There’s some part of people that thinks they can cheat death — and, of course, you can’t. But what do you think about the prospect of extending the human life span? I don’t want to live to be 120. I have spent enough time around people who are close to 100, over 100, to know that once you start burying your children, you’re ready. Personally, I’ve never met someone 100 or older who still wants to be alive. I have this analogy that I did a TikTok2
2
Vlahos has 1.7 million followers on TikTok, where she posts about her experience as a hospice nurse and often responds to questions about death and dying.
on. This is from having a conversation with someone over 100, and her feeling is that you start with your Earth room when you’re born: You have your parents, your grandparents, your siblings. As you get older, your Earth room starts to have more people: You start making friends and college roommates and relationships. Then you start having kids. And at some point, people start exiting and going to the next room: the afterlife. From what she told me, it’s like you get to a point when you’re older that you start looking at what that other room would be, the afterlife room,3
3
According to a 2021 Pew Research survey, 73 percent of American adults say they believe in heaven.
and being like, I miss those people. It’s not because you don’t love the people on Earth, but the people you built your life with are no longer here. I have been around so many people who are that age, and a majority of them — they’re ready to go see those people again.
“The In-Between” also has to do with the experience of being in between uncertainty and knowing. But how much uncertainty is there for you? Because in the book you write about things that you can’t explain, like people who are close to death telling you that they’re seeing their dead loved ones again. But then you write, “I do believe that our loved ones come to get us when we pass.”4
4
From Vlahos’s book: “I don’t think that we can explain everything that happens here on Earth, much less whatever comes after we physically leave our bodies. I do believe that our loved ones come to get us when we pass, and I don’t believe that’s the result of a chemical reaction in our brain in those final hours.”
So where is the uncertainty? The uncertainty I have is what after this life looks like. People ask me for those answers, and I don’t have them. No one does. I feel like there is something beyond, but I don’t know what it is. When people are having these in-between experiences of seeing deceased loved ones, sometimes it is OK to ask what they’re seeing. I find that they’ll say, “Oh, I’m going on a trip,” or they can’t seem to find the words to explain it. So the conclusion I’ve come to is whatever is next cannot be explained with the language and the knowledge that we have here on Earth.
Do these experiences feel religious to you? No, and that was one of the most convincing things for me. It does not matter what their background is — if they believe in nothing, if they are the most religious person, if they grew up in a different country, rich or poor. They all tell me the same things. And it’s not like a dream, which is what I think a lot of people think it is. Like, Oh, I went to sleep, and I had a dream. What it is instead is this overwhelming sense of peace. People feel this peace, and they will talk to me, just like you and I are talking, and then they will also talk to their deceased loved ones. I see that over and over again: They are not confused; there’s no change in their medications. Other hospice nurses, people who have been doing this longer than me, or physicians, we all believe in this.
Do you have a sense of whether emergency-room nurses5
5
Who, because of the nature of their jobs, are more likely than hospice nurses to see violent, painful deaths.
report similar things? I interned in the E.R., and the nurse I was shadowing said that no one who works in the E.R. believes in an afterlife. I asked myself: Well, how do I know who’s correct? How am I supposed to know? Are the people in the church that I was raised with6
6
Vlahos was raised in an Episcopalian family. She now refers to herself, as so many do, as spiritual rather than religious
more correct than all these people? How are you supposed to know what’s right and what’s not?
But you’ve made a choice about what you believe. So what makes you believe it? I totally get it: People are like, I don’t know what you’re talking about. So, OK, medically someone’s at the end of their life. Many times — not all the time — there will be up to a minute between breaths. That can go on for hours. A lot of times there will be family there, and you’re pretty much just staring at someone being like, When is the last breath going to come? It’s stressful. What is so interesting to me is that almost everyone will know exactly when it is someone’s last breath. That moment. Not one minute later. We are somehow aware that a certain energy is not there. I’ve looked for different explanations, and a lot of the explanations do not match my experiences.
That reminds me of how people say someone just gives off a bad vibe. Oh, I totally believe in bad vibes.
But I think there must be subconscious cues that we’re picking up that we don’t know how to measure scientifically. That’s different from saying it’s supernatural. We might not know why, but there’s nothing magic going on. You don’t have any kind of doubts?
None. Really? That’s so interesting. You know, I read your article with the atheist.7
7
“How to Live a Happy Life, From a Leading Atheist,” an interview with the philosopher Daniel C. Dennett, published in August.
I feel like you pushed back on him.
There are so many things in our lives, both on the small and the big scale, that we don’t understand. But I don’t think that means they’re beyond understanding. OK, you know what you would like? Because I know that you’re like, “I believe this,” but you seem to me very interested; you’re not just set in your ways. Have you ever heard that little story about two twins in a womb?8
8
Known as the parable of the twins, this story was popularized by the self-help author Dr. Wayne W. Dyer in his 1995 book “Your Sacred Self: Making the Decision to Be Free.”
I’m going to totally butcher it, but essentially it’s two twins who can talk in the womb. One twin is like, “I don’t think that there is any life after birth.” And the other is like, “I don’t know; I believe that there is something after we’re born.” “Well, no one’s ever come back after birth to tell us that there is.” “I think that there’s going to be a world where we can live without the umbilical cord and there’s light.” “What are you talking about? You’re crazy.” I think about it a lot. Do we just not have enough perspective here to see what could come next? I think you’ll like that story.
For the dying people who don’t experience what you describe — and especially their loved ones — is your book maybe setting them up to think, like: Did I do something wrong? Was my faith not strong enough? When I’m in the home, I will always prepare people for the worst-case scenario, which is that sometimes it looks like people might be close to going into a coma, and they haven’t seen anyone, and the family is extremely religious. I will talk to them and say, “In my own experience, only 30 percent of people can even communicate to us that they are seeing people.” So I try to be with my families and really prepare them for the worst-case scenario. But that is something I had to learn over time.
Have you thought about what a good death would be for you? I want to be at home. I want to have my immediate family come and go as they want, and I want a living funeral. I don’t want people to say, “This is my favorite memory of her,” when I’m gone. Come when I’m dying, and let’s talk about those memories together. There have been times when patients have shared with me that they just don’t think anyone cares about them. Then I’ll go to their funeral and listen to the most beautiful eulogies. I believe they can still hear it and are aware of it, but I’m also like, Gosh, I wish that before they died, they heard you say these things. That’s what I want.
You know, I have a really hard time with the supernatural aspects, but I think the work that you do is noble and valuable. There’s so much stuff we spend time thinking about and talking about that is less meaningful than what it means for those close to us to die. I have had so many people reach out to me who are just like you: “I don’t believe in the supernatural, but my grandfather went through this, and I appreciate getting more of an understanding. I feel like I’m not alone.” Even if they’re also like, “This is crazy,” people being able to feel not alone is valuable.
This interview has been edited and condensed for clarity from two conversations.
Complete Article ↪HERE↩!
Does Thinking About Dying Increase Your Risk Of Death?
By Tricia Goss
The human mind and body are intricately connected. The relationship between the two is so profound that it can significantly impact our well-being. Whether thinking about death increases the risk of death delves deep into this complex relationship. The age-old saying “mind over matter” suggests that our thoughts have the power to shape our physical reality, and scientific research supports this notion.
Psychoneuroimmunology studies how emotions, thoughts, and beliefs affect the immune and nervous systems (via Reference Module in Neuroscience and Biobehavioral Psychology 2017). A 2017 study in Physiological Reviews shows that the brain communicates directly with the immune system, releasing chemicals and hormones that can profoundly impact how your body functions. Stress hormones like cortisol, released when we experience psychological stress, can lead to health problems like cardiovascular issues and weakened immune responses (per the Mayo Clinic).
The placebo and nocebo effects illustrate this even further. Believing that a treatment will work can trigger remarkable healing responses, while negative expectations can have detrimental consequences.
Ultimately, it’s clear that our thoughts and physical well-being are intricately connected. By exploring the science behind psychosomatic illnesses and how the fear of death influences health, we can better understand how our thoughts shape our bodies’ realities.
Psychosomatic illnesses and their impact
Psychosomatic illnesses are physical conditions stemming from psychological factors like stress, anxiety, or emotional distress. Studies have consistently shown how psychological distress can trigger or worsen various physical health issues (per Healthline). For instance, 2014 research published in the World Journal of Gastroenterology highlighted that patients with IBS often exhibit high levels of anxiety and stress, which can worsen their symptoms.
Additionally, psychosomatic illnesses can affect our hearts. According to 2021 research published in Circulation, negative psychological factors — such as stress, anxiety, and depression — can increase our risk of developing cardiovascular disease (CVD). In contrast, positive psychological factors — such as optimism, resilience, and social support — can reduce our risk of developing the disease.
Similarly, psychological factors also play a significant role in chronic pain conditions. For example, a 2017 report in Neural Plasticity demonstrated a link between depression and chronic pain.
These examples provide compelling evidence of the profound connection between the mind and body.
The positive aspects of mortality awareness
The idea of mortality is a complicated issue that encourages us to explore the depths of our human experience. Realizing that your time on this planet is limited can bring about many emotions, such as fear, anxiety, and despair. However, this realization can also provide you with an opportunity for personal growth and positive change. It urges you to reflect on your life, evaluate your priorities, and cherish every moment.
Embracing life’s impermanence can be a powerful catalyst for personal growth as well as developing and changing habits. It can help motivate you to live a more authentic, meaningful, and purposeful life. By accepting that life is fleeting, you can be inspired to wake up each day with a sense of purpose and gratitude for the world around you. By facing your fears with resilience and courage, you’ll learn to appreciate life’s uncertainties and make the most of the time you have.
What to do if thinking about dying causes anxiety
While it’s important to recognize that death is a natural part of life, it’s also vital to avoid fixating on it and letting it cause undue stress or anxiety. The good news is that there are plenty of constructive steps we can take to address our concerns and maintain a positive outlook on life. A study published in 2022 in Current Psychology has shown that people who find meaning in their lives and can effectively manage stress are less likely to experience death anxiety. This means growing and cultivating resilience in the face of existential fears is possible.
If you worry about death frequently or feel like these fears are starting to impact your daily life, seeking mental health support is a great way to be proactive and get the help you need. Mental health therapists and psychologists can offer guidance, coping strategies, and emotional support to help you navigate your fears and feel more resilient. By embracing the challenges of mortality and seeking support when needed, you can lead a more balanced, fulfilling life and face life’s uncertainties with greater confidence.
Complete Article ↪HERE↩!
Death is inevitable
— Why don’t we talk about it more?
Death is hard to talk about. But death doula Alua Arthur says if we want to live presently and die peacefully, we have to radically reshape our relationship with death.
About Alua Arthur
As a death doula, Alua Arthur help individuals and families to navigate the emotional, legal and spiritual issues that arise around death. Arthur worked as an attorney prior to entering the field of “death work.” Her organization, Going with Grace, educates fellow death doulas in nonmedical end-of-life care. Her forthcoming book, Briefly Perfectly Human, reframes how we think about dying.
Arthur was recently featured in the National Geographic television series Limitless, in which she helped actor Chris Hemsworth map out his own future death. She has been featured in the Los Angeles Times, Vogue, InStyle and more. She is a former director of the National End-of-Life Doula Alliance.