Although death is an inevitable part of life, most people don’t like talking or thinking about it. But for some, the dread and fear surrounding death is so intense that it interferes with their ability to live a healthy life. Here are ways to cope with your fear of death, and move beyond death anxiety to death acceptance.
What is Death Anxiety
Death anxiety, or thanatophobia, is characterized by a fear of one’s own death or a fear of the dying process. Death anxiety can manifest in a variety of ways. While older adults may be confronted by overwhelming thoughts about their own mortality, people of all ages can experience death anxiety. Some may have an excessive fear of losing their loved ones. Some may obsess over the ways they might contract a terminal illness. Others may frequently visit their doctors and request medical tests or body scans, out of fear that they have a chronic disease. Still others may worry about leaving loved ones behind after they die.
Feeling uneasy about the end of life is completely natural. Fear of the unknown and what happens after death is a legitimate concern. But when negative thoughts about death and dying prevent you from living your normal life, it may be necessary to address your anxiety towards death.
How to Cope
The first step to cope with the fear of death is to recognize that fearing death is often a normal part of the human experience. When we accept that death is natural and inevitable, we can come to terms with it and find peace. The Buddhist monk Thich Nhat Hanh’s book No Death, No Fear: Comforting Wisdom for Life is a practical place to start for those looking to overcome their death anxiety. He uses guided meditations and personal stories to help readers live a life free of fear.
People experiencing death anxiety will often avoid talking about it, which in turn negatively affects their mental health. But talking about our fears with our loved ones can be a powerful and healing strategy to overcome the fear of death. If you’re not sure how to break the ice,The Conversation Project offers free toolkits for starting conversations about death and dying. Attending a Death Cafe is another great way to discuss death in an open and supportive environment.
Another helpful way to feel more comfortable with death is to practice rituals. Whether you are religious or not, rituals can help create a sense of meaning and comfort to prepare for your own death as well as the death of your loved ones. You may choose to contemplate the loved ones you have lost and light a candle for them, or practice a death meditation to ease your mind about the inevitability of death. Diving into your family’s religious traditions and exploring new spiritual ideas can also help you move away from death anxiety toward death acceptance.
Finally, focusing on living in the present moment and enjoying every day that you are alive can serve as a powerful tool to curb death anxiety. One of the best pieces of advice from others who have conquered their death anxiety is to focus on living authentically, passionately, and well.
— 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.
This woman was able to participate in a robot tour of the Whitney Museum by driving a telepresence robot around the museum from her hospice bed in Connecticut.
Twenty years ago, I started a nonprofit organization called Older Adults Technology Services (OATS) based in New York City that helps senior citizens build new models of aging while learning technology skills. We use design thinking methods to create new programs for social impact, using approaches like co-creation, prototyping and customer satisfaction metrics.
We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum.
Recently we turned our innovation lens toward what was happening with older people in end-of-life situations to see if we could design new programs to help them. Using a design thinking methodology, we met with people who were dying and asked questions like, “What is a good day like for you?” and “If you could change one thing about your end-of-life process, what would it be?”
We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum. Some had been told they had months left, while others were living with just a few weeks in their prognosis. We visited other hospices around the country and spoke with social workers, chaplains, elder law attorneys and service providers. We read books on death and dying by Caitlin Doughty, Atul Gawande and Richard Rohr. We had weekly review sessions and talked to experts on business planning and branding and customer experience design.
We Are Failing at Dying
Here is what we learned.
We are failing at dying. Instead of a time for growth, deep connection, reflection and deliverance, our ends of life are consumed by petty distractions and institutional imperatives. The dying people we interviewed had not given up on life; rather they were full of desire to mark their final days with meaningful experiences and leave their affairs in order.
Yet almost everyone expressed sadness and frustration that they lacked a path for the right kind of death, the kind of passing that would reflect well the kind of life they had lived and the essence of the person they had become.
People described an entrenched group of institutions, resistant to change and wielding enormous power, which have grown to dominate the last stage of life — hospitals, funeral homes, home care agencies, religious organizations. When asked what they wanted instead people asked for three kinds of help: logistics, last days and legacy.
We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.
The Burden of Unmet Tasks
“Do you know someone who can come clean out my attic?” asked one woman in her fifties, fighting cancer and concerned that her overworked and grieving husband was sinking under the weight of daily tasks such as lawn mowing and housework. It was a startling response, in a bedside interview, to the question, “what’s most important to you now?” We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.
Logistics, it turns out, are top of mind for people who are dying. One woman spoke of her satisfaction in having arranged her funeral details and even set aside a dress to wear in her coffin. In an echo of Maslow’s famous hierarchy of human needs, the quotidian tasks form the base of the pyramid, and it seems difficult for people to elevate their thinking while still burdened with a laundry list of unmet tasks.
Many people commented on the need for legal help with logistics; writing wills, advance directives, health care proxies and financial plans. For many people, procrastination on legal matters resulted in family conflicts, loss of control over health decisions and anxiety about financial losses.
Unfortunately, once people were already in hospice, it was sometimes too late to interview lawyers and schedule notaries for important documents. Critical decisions about health, finances and death planning were left to caretakers and service providers, leaving the dying individual with little control over final decisions.
Death Needs a Reset
Being able to choose the location, activities and company of one’s last days was a recurrent theme. Despite being just days from passing, people expressed interest in writing articles, visiting museums, doing last trips with family members and exploring culture. My organization was able to arrange a robot tour of the Whitney Museum for one woman, who drove a telepresence robot around the museum from her hospice bed in Connecticut. At the end of the day, she drove the robot to the window and silently watched the sun setting over the river.
One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path.
Finally, hospice patients were predictably focused on their legacies. We spoke for hours with people about their thoughts on post-death rituals, the value of a personalized funeral and the services that might help them express their individuality after passing. There was a great deal of openness to modern, innovative funeral approaches— “living funerals,” celebratory parties after death and eco-friendly caskets and cremations.
One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path. What’s at stake is no less than our self-determination as free individuals. Like any life transition, death is a chance to explore and express ourselves in our mature stage, when we have perhaps the most important things to say. Modern culture offers endless chances for tailoring this most personal of events to our unique needs, but our social discomfort talking about death blocks us from acting.
Time for Innovative Thinking
We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.
We found some truly innovative models in our research: “death cafes” where people gathered to explore themes of mortality and end-of-life planning; alternative hospices such as the Zen Hospice in California and Regional Hospice in Connecticut; digital death planning apps and sites such as Everplans and Everest Funerals; community learning programs run by the Plaza Jewish Community Chapel; and a national dialogue and events series sponsored by the San Francisco-based nonprofit Reimagine. Unfortunately, these programs only serve a small percentage of those who want them.
Here is a vision for reshaping end-of-life services and systems in accordance with what people asked for in the interviews.
Logistics: We need insurance and financial products that recognize the need for intensive health and personal assistance during the end-of-life period and provide enhanced benefits for people who need them. Government might create tax-free plans for legal fees associated with end-of-life plans, and the service sector should increase programs to ensure that people over the age of 60 have a legal will, advance directive and other necessary basic documents.
Last days: Incubate and accelerate a new service sector focused on proper preparation and programming for end-of-life. As major life transitions go, dying is on a par with getting married or having children, so let’s build an industry of death services to rival wedding planners and baby showers. Bring on the social entrepreneurs!
Legacy: Encourage innovation at end of life. We spoke to several innovators who had to pursue legislative recourse to overturn outdated regulations that restricted new approaches in hospice and funeral care. New York City has over 10,000 nonprofit organizations but only one nonprofit funeral home. We need to open the sector to more innovation and reduce regulatory barriers to innovation.
Fear of death and decline holds a strong sway over our minds as we age, and it’s no wonder that we are reluctant to face it. But the longevity revolution means we are living longer and expecting more from each day of our lives, and technology is adding powerful tools for managing our last days and legacies. We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.
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.
— And We Chose Not To Tell Him. Did We Make The Wrong Decision?
The author’s mom and dad in the garden at their home in Johannesburg during the COVID pandemic in 2020. “My dad loved gardening and growing roses,” she writes. “This is the last photo I have of him when he was still mobile.”
“Sometimes I feel pressured to confirm that he’s getting better. I can’t tell him that actually, he won’t.”
I walk into my father’s bedroom, and there’s a different man in his bed. I reel in shock but slap a smile on my face because I don’t want to hurt his feelings. It’s still him, but the disease he’s been fighting for the last 10 years is stealing him away from us.
My father’s bedridden, out of breath even at rest. He’s strapped to his rumbling oxygen machine all day and he’s lost so much weight that the bones in his collarbones and cheeks are straining against his skin. He has a barrel-shaped chest because his lungs are overinflated with air that they can’t process. This is what COPD, Chronic Obstructive Pulmonary Disease, looks like.
My mother calls me out of the room and into the kitchen where we huddle with the excuse of making tea.
“I asked the doctor for more antibiotics for your father to treat his cough,” she whispers in Italian.
Coughs are common for him and happen every few weeks. If not treated promptly, usually with a round of antibiotics, they can spiral into a full-blown chest infection.
“He said it’s only a matter of time before your father goes.” My mom’s eyes widen and fill with tears. “What does that mean? Where would your father go?”
I swallow hard, but my throat is concrete. We’ve been expecting this — COPD is a progressive disease, and over the last year, it’s been getting worse — but it’s still a shock.
“When’s the doctor coming?” I ask.
She frowns. “Why would he come?”
“To tell Dad that he’s dying.”
“No, we can’t tell him,” my mother says firmly. “It would make him so depressed.”
My mother is the person doctors inform about my father’s condition. With English being my father’s second language, he’s relied on her to filter and trickle the information down to him.
Over the years, when my dad was frustrated with his illness, we’d gently remind him that he had lung damage from smoking. But there’s what I call “disease denial” in my family. My parents have always tried to overcome illness by pretending it doesn’t exist. Years previously, when my father had prostate cancer, he didn’t acknowledge it was cancer. He’d call it a “crust” the doctors would remove. (Thankfully, he was fine.) Even when I was diagnosed with thyroid cancer at 35, my parents denied it completely, as though something so scary couldn’t happen. Perhaps this is how they cope.
I wonder what I’d want if I were in his position. Would I want someone to tell me that my time was limited and that I wouldn’t ever be able to step out of bed again? How would I feel if the people around me were lying to me about my condition?
A study published in Supportive Care in Cancer found that not telling a terminally ill patient that they’re dying is quite common in some countries, such as Italy, Spain and Japan — and even doctors struggle with the question of whether or not to inform their patients.
An oncologist interviewed in the study states that although a doctor has the right to inform their patient as long as this knowledge won’t harm the patient’s health, it’s difficult to know what harm could be caused by spilling the beans.
I’m now worried about what harm could be caused to my father — and us — by keeping the information to ourselves.
I’m not sure how to navigate visits with my father when the lie of his death is hanging over me, especially when he says heartbreaking things like, “Why can’t the doctors figure out how to treat me?”
This might sound strange, but my father never learned how to use the internet, so the only information he receives about his condition is from us and his doctors.
I just nod and say stupid things like, “It’s terrible… I’m so sorry…”
Even worse, sometimes I feel pressured to confirm that he’s getting better. Once the antibiotics start to clear up his cough, he says, “I think a few more days in bed, and then I’ll be able to walk around.”
What am I supposed to say to that? I can’t tell him that actually, he won’t. Or that the antibiotics won’t ever completely heal him. Instead, I say, “That’s great, Dad!”
When he begins to wrap up a phone call, I quickly slip in an “I love you lots.” It’s weird because we’ve never had a relaxed, open relationship in which saying such things to each other is no big deal. But, while he doesn’t know he’s dying, I do, and it makes me want to remind him that he’s loved. When I express such emotion, he pauses, sometimes laughs uncomfortably, or says “OK!”
If he knew he was dying, maybe he’d understand why I’ve suddenly turned into a sappy, emotional thing.
A photo of the author’s parents taken when they were dating. “My mom is approximately 20 years old and my dad is 27,” she writes. “They’re pictured at my mom’s parents’ house during the festive season. My dad’s holding a cigarette — he always loved smoking.”
Lying does strange things to us. Soon, it feels like my mother, sister and I start believing our own lies. Or maybe we’re just in denial about my father dying.
“Dad’s being admitted to the hospital for another one of those chest infections,” my sister breezily tells me on the phone when he’s re-hospitalised a few months later. “Same old stuff, nothing to worry about, I’m sure.”
We’ve been on the flare-up rollercoaster a few times over the last two years and we’ve become used to it. It’s easy to forget that one of those flare-ups could lead to death. My father’s lungs are so damaged from decades of smoking that they can’t handle a mild case of the sniffles.
Denial becomes grim acceptance. I’m constantly waiting for the call that he’s near the end. My heart races and my hands shake every time the phone rings. My anxiety intensifies when doctors say his body’s not absorbing the antibiotics he’s been prescribed for his lung infection.
The fact that my father doesn’t know he’s dying means that I wait for a final conversation with him that might not happen. This deathbed talk isn’t something reserved for Hollywood movies: I’ve heard about it from friends who’ve lost their parents. The general consensus is that there’s a loving conversation between the dying parent and their children, with those last words being meant to emotionally strengthen the surviving family members.
If we’d been honest with my father about his impending death, perhaps he would’ve been in a position to initiate such a conversation, knowing that his time was so limited.
During his life, my father was always a bit of a mystery, holding his deep emotions close to his chest and sometimes choking on them the way he was now choking on air. It was rare for him to hug us or say that he loved us. I hardly ever saw him cry, except when his parents died and Italy lost the World Cup.
He became even more reserved during his last weeks. I would have loved to know what he was thinking or feeling and if he had any fears about dying, but I couldn’t chat to him about any of it.
“My father was a mystery even in the days leading up to his death, and I fear we might have had something to do with this because we kept news of his own death from him.”
Hiding the truth about his condition from him causes me to have to censor myself when this time in a person’s life should be the most honest and open.
Despite this, the doctors go along with our wishes of not telling my father the truth.
Bad things always seem to happen on a Monday morning. The call comes in at 8 a.m. The lung specialist finally gives it to us straight: My father won’t make it to the end of the day, and we have to go to the hospital right away.
My husband and I rush to see him for the last time. I’m anxious about what to expect. Will we all cry together? What will he say? How am I going to deal with seeing my father in the last hours of his life?
I push through the doors of the high-care unit and see my father lying in a hospital bed in the room ahead of me. He’s looking straight at me. Relief washes over me at the thought that we’ll be able to speak.
But as I get closer, I realize his eyes aren’t opened – they just appear that way because the non-invasive ventilator strapped so tightly over his head is pulling the skin of his face. A machine is breathing for him.
This isn’t the deathbed conversation I expected. It’s a one-way conversation in which we hope our words give him the comfort he needs to deal with the last few hours of his life and whatever happens next.
But I’m relieved I have the presence of mind to tell him, over and over again, that I love him so much. I recall research that the sense of hearing is the last one to go during the dying process.
My father’s heart is a galloping beast, still trying to ride above his drowning lungs, a superhero flying above a city that’s being destroyed. He’s still trying to cling to life, but when he slips away, it’s peaceful. How can my father, who was larger than life, have such an anticlimactic death?
He’s gone, and now I sit with the anxiety over what he must’ve been feeling or thinking as he neared death’s door. It helps me to think that perhaps he knew he was dying, and there’s some evidence of this. A few days before his death, he told my mother three men he knew from childhood visited him at the hospital. Sometimes, she saw him whispering to someone in the room she couldn’t see, deep in a conversation she couldn’t understand.
The author and her family (pictured from left: the author’s father, her sister, the author, and the author’s mom) during a trip to Italy in 1993. “We’re at my uncle’s home in Milan,” she writes. “I was 12.”
After my father’s death, I try to ease my anxiety over how I can never go back in time to see him again by engaging in talk with my mother about his last days. I want all the details of what he was thinking or feeling because he didn’t tell me.
“Before he went back to the hospital for the last time, he said that he’s had a wonderful life,” my mother says. “He said he had such great daughters and was blessed.”
Hearing this is bittersweet. I wish he’d been in a position to tell me and my sister himself. Sadly, my father was a mystery even in the days leading up to his death, and I fear we might have had something to do with this because we kept news of his own death from him.
A few weeks later, I’m walking through a grocery store and regretting choosing this day to shop. It’s Father’s Day, and all the sappy dad-related songs are playing. I try to fight back the tears and the anxious thoughts that storm into me. What are the last things my father and I said to each other? I can’t remember, and it stresses me out. But then a memory sneaks into my grieving brain, bringing peace.
Two weeks before my father’s death, when he was stuck in a loop of being in and out of the hospital, he was frustrated and unsettled. He couldn’t breathe, even with the oxygen streaming into his nose, and we all took turns fanning his face with a piece of cardboard.
While everyone in the room was chatting, my father reached over and took my hand. He kept it there with him for a good few minutes without saying anything. I can’t remember the last time he held my hand. This is what I should choose to remember as our last interaction. This, more than the words we did or didn’t exchange, is what matters.
I realise that my grieving brain has been trying to hold on to the moment of his death because I’m not ready to deal with it. I find comfort in the words of Elisabeth Kübler Ross in her book “The Stages of Dying”: “There is a time in a patient’s life when the pain ceases to be, when the mind slips off into a dreamless state… It is the hardest time for the next of kin as he either wishes to take off, to get it over with; or he desperately clings to something that he is in the process of losing forever.”
Although I still wonder if my father should have known he was dying, I realise I don’t want to cling to his last hours. I don’t want to remember him being sick, when he stopped looking like himself, but I do want to remember how he held my hand in the hospital that day. I want to remember how he used to make us laugh and how he appeared to me in a dream before his death. With a big smile on his youthful, healthy face, he said, “Thank you for everything.”
— What I find with some regularity is that people who are dying really do want, need and desire to talk about it.
By Rabbi Joseph H. Krakoff
Hospice — or as it is sometimes referred to — the ‘H’ word — can be a very scary, anxiety-producing proposition. And while that certainly makes sense, it is also a compassionate place to go for care that offers comfort, peace and love. As the end of life draws near, hospice is poised to meet every individual where they are at physically, emotionally, psychologically and spiritually.
What I have discovered over the last decade of visiting patients who have chosen hospice care is that even when they were reticent at first, they are ultimately grateful to have the tremendous support of a team of nurses, aides, social workers, clergy and volunteers who are there for them around the clock.
I can’t help but think back to an experience I had several years ago on a patient visit. I went to see an 85-year-old man who had been diagnosed with end-stage cancer. His adult children had made a unanimous decision not to tell their father that he was dying. On my first visit, the three siblings greeted me in the foyer of the man’s home to firmly instruct me not to tell their dad that he was on hospice. Naturally, I accommodated their request. Then, on my third visit, without warning, the man asked his children to leave the room because he wanted to speak to me alone.
He asked me to sit down next to him on the chair by the bed and said the following: “Rabbi, my family thinks that I don’t know what is going on. But I do! I recognize that I am dying and know I am receiving hospice care. I have lived a very good life. I am grateful and know my time is short. I have come to terms with my demise. But what I struggle with the most is that I really want to talk with my children about the fact that I am dying, but they won’t hear of it. Please help me help them. I need to get my affairs in order. Even more, I want the chance to say goodbye to each family member and express my gratitude and love for them. Rabbi, please help me. I am desperate.”
This is not an uncommon occurrence. What I find with some regularity is that people who are dying really do want, need and desire to talk about it. And so often, it is the hospice experience that plays an essential role in bringing families together to have these all-important conversations.
The word hospice itself originated in medieval times, a derivative of the Latin “hospes” meaning host or guest. Hospice as a concept appears initially in the mid-1800s to describe caring for dying patients and is based on the model created by Mrs. Jeanne Garnier, the founder of the Dames de Calaire in Lyon, France. The Irish Sisters of Charity adopted it when they created Our Lady’s Hospice in Dublin, Ireland, in 1879 and then again when they opened St. Joseph’s Hospice in Hackney, London, England, in 1905. It wasn’t until 1974 though that the first hospice was established in the United States.
Today, hospice is available through Medicare to critically/terminally ill patients who are declining and expected to die within six months, although they often live longer. The individual agrees to forgo any kind of aggressive medical intervention including curative treatment. The vast majority of hospice is covered by Medicare, though some is paid for by private insurance, Medicaid and the Department of Veterans Affairs. Hospice agencies develop a specific care plan for each patient to treat the symptoms of the person’s illness and are on call 24 hours a day, seven days a week.
One of the biggest misnomers about hospice care is that accepting a referral to hospice means that the individual is “throwing in the towel” and giving up on life. For this reason, it is not unusual that people may be discouraged by family members. But when the medical team determines that there is nothing else clinically that can be done and the terminally ill person is psychologically ready, hospice can be the best and most humane choice for reducing physical pain, maximizing emotional well-being and enhancing spiritual peace. It is not unusual to see someone on hospice actually begin to feel better due to the layer of care provided by the hospice team.
In choosing hospice, the individual has made the decision, in the event of a crisis, not to go to the hospital or to call 911. Rather, all phone calls for help are made directly to the hospice organization. And if, for whatever reason, a person changes their mind, they always maintain the authority to revoke their hospice benefit and revert to calling 911, going to the hospital or resuming treatment.
While we can be certain that there will always be a modicum of discomfort about uttering the ‘h’ word, the truth is that hospice care wholly focused on comfort and peace is a true gift. At JHCN, we take pride in meeting each person where they are and thoughtfully addressing their whole range of needs in an honest, caring and loving way. Most of all, we provide the unique opportunity — through our social workers, clergy, volunteers and Life Enrichment specialists — that when the body can no longer be healed, we focus on the holy responsibility to assist in healing the spirit and the soul.
From left to right: Dr. Alden Doerner Rinaldi, Dr. Caitlin Brennan, Dr. Zachary Sager, Dr. Roxanne Sholevar, and Dr. Yvan Beaussant pose for a portrait inside one of the rooms at the Care Dimensions “Hospice House” in Lincoln where dying patients can receive synthetic psilocybin as part of a small trial by researchers at Dana-Farber Cancer Institute.
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 combinesa 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.
Dr. Yvan Beaussant, a palliative care physician at Dana-Farber who is leading a small trial testing synthetic psilocybin — the active ingredient in so-called magic mushrooms — in patients in hospice care.
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.
Timothy 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.
Leary caused a furor as a lecturer in clinical psychology at Harvardin 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 isthe 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 playlistsynched 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.”
A curled-up Timothy Leary reads a book in 1961.
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 forpost-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.”
A bed in one of the rooms at the Care Dimensions “Hospice House” in Lincoln where dying patients can receive synthetic psilocybin as part of a small trial by researchers at Dana-Farber Cancer Institute.
As Halloween, Day of the Dead, and All Souls and Saints Day have passed, we reflect on death and the afterlife. In fact, it’s all consuming. It’s impossible to not think of our loved ones we have lost or those we may lose when visiting grave sites or setting up an altar with candles.
Whether religion comes into the conversation or not, death is a complex topic to discuss. The dying process is a mystery for most people, and shielding away from “the end” is an uncomfortable reality that many aren’t ready to face. Oftentimes, most people ignore it alltogether.
Avoidance, however, doesn’t always work when it comes to the inevitable — preparing for one’s departure from the world. And sometimes, people just need a little help, guidance, and comfort to ease into this next transition.
That’s why having a death doula assist during the latter stages of life is increasingly becoming a popular business and option for those heading toward the light.
A “doula” is a term commonly employed to describe someone who supports a pregnant woman during childbirth. The name is derived from the Greek word “doulđ,” which means “slave or female servant.” More recently, the definition of a doula has been expanded beyond the introduction to life and includes someone who provides support to those who are nearing the end of their lives.
What does a death doula do?
The tasks performed by death doulas can change depending on the needs of the person they are currently assisting. A death doula may concentrate on performing menial duties so that others who are close to the dying person can concentrate on spending meaningful time with them. They may assist with funeral rites and ceremonies, such as ensuring that the proper cultural or religious customs are observed during the dying process and that the deceased’s body is appropriately handled after death.
Listening to the dying person and others close to them while providing nonjudgmental emotional and spiritual support can be a significant portion of the death doula’s job description.
To learn more about this compassionate role, we asked three death doulas about their difficult but rewarding profession.
Interview questions have been edited for length.
Alysha Suryah, Baltimore
Q: What kind of training goes into being a death doula?
A: While end-of-life doulas have been around for years, the process for entering this space as a professional is somewhat unregulated. There are a plethora of opportunities to get out in the community to receive training in specialized topics, like rituals and communication, as well as the business side of this role; however, certifications are not required to provide this level of care to clients or even within your community — there are even opportunities to be a volunteer doula at hospice centers or other related organizations.
The only thing needed to be a doula is a willingness to provide compassionate care and a deep commitment to supporting individuals and their families during this potentially life-changing journey. It’s really a role rooted in humanity, and while formal training and certifications can certainly enhance your skills, the essence of being a death doula is the unwavering dedication to being there for others when they need it most.
Q: What are some of the challenges of the job?
A: One of the primary challenges of this role is the emotional toll it can take, even if one is vigilant about protecting their emotional well-being. Death is an intensely personal experience for everyone, and as an end-of-life doula, you have the potential to build deep, meaningful relationships with the individuals you serve. Bearing witness to their grief, pain, and loss, as well as the grief of their families following their passing, can be emotionally taxing at times. Sometimes, the relationships formed with clients are so close that you find yourself sharing in their sense of loss. It necessitates practitioners to have a considerable amount of mental fortitude to provide unwaveringly compassionate care consistently.
In addition to the emotional challenges, end-of-life doulas also encounter practical challenges. Effective communication, including facilitating difficult conversations, is a key aspect of the role. Irregular hours, often involving evenings and weekends, demand flexibility. Additionally, managing multiple clients simultaneously can increase the risk of burnout, emphasizing the need for self-care and support. Balancing the emotional demands and the practical challenges of the role, end-of-life doulas exemplify resilience in their commitment to providing support while navigating the complexities of end-of-life journeys.
Q: Is a death doula brought into hospice, or is it home care?
A: The professional role of a death doula is remarkably diverse, shaped by an individual’s strengths, experiences, interests, and the specific needs of their community. Death doulas can be found in both hospice and home care settings, and their responsibilities closely align.
In hospice settings, death doulas collaborate closely with hospice teams to provide comprehensive support to patients and their families. Their mission typically involves offering emotional support and guidance, contributing to legacy projects, and assisting individuals throughout the end-of-life journey. Their role seamlessly integrates within the hospice care framework. Conversely, some death doulas choose to operate within the context of home care. In this capacity, they provide support to individuals who have decided to receive end-of-life care in the comfort of their homes. Within this environment, death doulas can have a higher degree of flexibility compared to the structured relationships found in hospice settings. Their services encompass companionship, emotional and/or practical support, as well as guidance and education on end-of-life decisions. They also continue to provide support to clients’ families, guiding them through the dying process in a familiar environment.
Catherine Durkin Robinson, Chicago
Q: What led you to become a death doula?
A: I’ve been doing death doula work for a long time. Raised Irish Catholic, I was at my first “Last Rites” when I was five, and thought everyone was raised to believe that death is a natural part of life. I was much older when I realized that most of my friends were shielded from death and quite frightened by it. So I’d been their “death buddy” for years. I was also a longtime volunteer for two hospice organizations. It was around the time of the pandemic when I realized my 30-year career as a political organizer was coming to an end. I wanted to continue advocating for people outside the political system (it’s gotten quite toxic out there.) Someone said that I was already doing this work, so I went back to school (University of Vermont) and opened up my practice.
Q: What are some of the biggest challenges in your line of work?
A: I think one of my biggest challenges is helping people to see death in a different light. We can be awed by its mystery rather than frightened by it. Another challenge is helping people understand that plant medicine, or psychedelics, can reduce anxiety and fear around end-of-life. People are afraid of that idea, too. So, I’m pioneering in this space and need to remember that and be patient as I go.
Q: I’m interested in your experience in the polyamorous space. Can you discuss this?
A: Yes, there are lots of challenges about the end of life for different families. This is especially true for non-traditional families, like polyamorous or anyone on the LGBTQ+ spectrum. As someone with training and lived experience in this realm, I’m happy to advocate for families and help healthcare providers to better support them when needed.
Laura Lyster-Mensh, Washington D.C.
Q: How long have you been assisting others as a death doula?
A: I have always been interested in the processes of birth and death. At my stage of life, there is more death, and I wanted to explore how to be a better caregiver, supporter, and mourner.
I started my training in late 2021 and have been volunteering with dying people and doing death awareness work since early 2022.
Q: How has becoming a death doula changed your perspective on death and dying?
A: I’m less afraid of dying. I am able now to separate dying from death, and that is quite helpful.
Q: Can you tell me about the death positivity programming at the Congressional Cemetery, where you are a death doula?
A: Congressional Cemetery is taking a bold and active stance on this programming. Despite a very busy calendar with so many activities going on, they make space for these special events and gatherings. It’s innovative, and the community of death-positive participants is growing and supporting one another. It’s an honor to be facilitating these programs.
People stop me, often, when I’m walking around the cemetery and say, “Aren’t you the death doula?” These are the start of some of the most interesting and enriching conversations I’ve ever had. It is amazing how much people want to talk but don’t know where to start.
